Arizona Support Groups and Organizations

Tucson - Soft Tissue Sarcoma Support Group
The Arizona Cancer Center would like to invite you to our quarterly Tucson Area Sarcoma Support Group. We have formed an exciting partnership with The Arizona Cancer Center. All meetings will take place at the AZ Cancer Center, North Campus, 3838 N. Campbell Ave., Tucson - Room 1290, from 3:00 - 4:30 pm. This meeting is for sarcoma survivors and caregivers. All are welcome. Parking is free. Refreshments will be served.

This will be a great place to connect face to face with people affected by soft-tissue and bone sarcoma; to share valuable information and gather support. We hope that you can join us. The quarterly meetings will take place in mid January, April, July, and October. Detailed information will be sent to you - upon request.

For more information, please call oncology social worker, Jill Winter at (520) 694-0845 or jwinter@umcaz.edu.

California Cancer Centers with a Sarcoma Focus

Cedars-Sinai Cancer Program
Cedars-Sinai, located in Los Angeles, is a patient-centered, comprehensive and specialized cancer program. On their website, they state, "At the Cedars-Sinai Cancer Program, dozens of nationally recognized programs and services are all under one interconnected, medical "roof"--an important benefit to cancer sufferers. Patients can be confident that every resource of this remarkable organization is brought to bear in delivering leading-edge healthcare services."

UCLA Sarcoma Program
The UCLA Sarcoma Program provides innovative multidisciplinary treatment for adults and children with sarcoma at any stage of the disease. UCLA is one of the three busiest sarcoma centers in the nation. On an annual basis they evaluate over 800 patients with sarcoma, 500 of which undergo surgery at UCLA. At our weekly sarcoma conference physicians specializing in sarcoma from surgical oncology, orthopedic oncology, medical oncology, radiation oncology, pediatric oncology, pathology and radiology formulate and coordinated optimal treatment strategies for individual patients

California Support Groups and Organizations

In Los Angeles: Cedars-Sinai's Sarcoma Support Group
Meets the third Wednesday of each month from 12:00 to 1:30pm.

Near San Francisco: Sarcoma Alliance (SA)
The Sarcoma Alliance is "striving to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, guidance, education and support." They have extensive guidance, education and support resources on their website, including excellent resources for the newly diagnosed. They also have an online discussion board and a financial assistance program. 

Washington, DC, Cancer Centers with a Sarcoma Focus

Washington Cancer Institute and Lombardi Cancer Center
The Washington Cancer Institute and Lombardi Cancer Center is affiliated with Georgetown University. Their website states, "We have extensive experience treating both bone and soft tissue tumors of the extremities, pelvis and shoulder girdle. We have performed more than 3,000 tumor operations since 1979. We are leaders in limb-sparing surgery and have pioneered many surgical techniques in use at this and other cancer centers."

Florida Cancer Centers with a Sarcoma Focus

H. Lee Moffitt Cancer Center and Research Institute
The H. Lee Moffitt Cancer Center and Research Institute located at the University of South Florida in North Tampa, Florida brings together experts from a variety of cancer specialties to determine the best treatment plan for each patient, while linking together the Center’s extensive array of support services. As part of a group of National Cancer Institute Comprehensive Cancer Centers, Moffitt focuses on the development of early stage translational research aimed at the rapid translation of scientific discoveries to benefit patient care. The Sarcoma Program at the center takes an interdisciplinary approach to treating sarcomas.

Georgia Sarcoma Support Groups and Organizations

Emory Winship Cancer Institute's Sarcoma Support Group
Meets the 3rd Wednesday of the month from 6:30 to 8:00pm

Iowa Cancer Center with a Sarcoma Team

The Holden Comprehensive Cancer Center
Located in Iowa City, Iowa: The Holden Comprehensive Cancer Center, located at the University of Iowa Hospitals & Clinics, has a focus group called the "Sarcoma Tumor Board Multidisciplinary Team." This is a group of physicians who meet twice a month to discuss cases and care plans and to gain a better understanding of the roles they each play in the treatment of sarcoma.

Kansas Cancer Centers with a Sarcoma Focus

Sarcoma Institute at Menorah Medical Center
The Sarcoma Institute at Menorah Medical Center is a multi-disciplinary team of physicians, nurses, and allied health professionals dedicated to the care and treatment of patients with bone and soft tissues tumors. From infants to seniors, the professionals of the Sarcoma Institute treat patients with both primary malignant and benign tumors of the bone and soft tissues, as well as metastatic cancer of the bone. The Institute provides state-of-the-art treatments including surgical, medical and radiation, in a combined modality to offer patients the most effective care. Both research and education play a crucial role in the Institute by enhancing patient knowledge and continuing to enhance the field of sarcoma. The Institute is located in Overland Park, Kansas.

Maryland Cancer Centers with a Sarcoma Focus

The Johns Hopkins Sarcoma Center
Located in Baltimore, Maryland: The Sarcoma Center at Johns Hopkins provides comprehensive care for pediatric and young adult patients with bone and soft tissue sarcomas. The Center uses a multidisciplinary team approach to care and treatment, which includes pediatric and adult medical oncology, surgery, pathology, diagnostic radiology, orthopaedics, radiotherapy and plastic surgery. Cases are reviewed by a multidisciplinary team at weekly conferences.

Massachusetts Cancer Centers with a Sarcoma Focus

Dana-Farber Cancer Institute
Located in Boston, Massachusetts, the Dana Farber Cancer Institute is a teaching affiliate of the Harvard Medical School. On their website, they state, "The Center for Sarcoma and Bone Oncology has dedicated specialty expertise in the pathologic and radiologic assessment of sarcoma, the application of novel soft-tissue and bone reconstructive techniques permitting limb salvage, and access to the most promising new therapies for these malignancies."

Massachusetts General Hospital
Center for Sarcoma & Connective Tissue Oncology

Sarcoma Support Groups and Organizations

Boston: Dana Farber Cancer Institute's Sarcoma Support Group
Registration is required. To register, call Sarah Paysnick, at 617-632-4235.

Hudson: Jennifer Hunter Yates Sarcoma Foundation (JHYSF)
JHYSF was created in honor of Jennifer Hunter Yates, who died at the age of 33 after battling sarcoma for 17 months. JHYSF supports sarcoma research, sarcoma patient and family education and sarcoma family financial support at the Massachusetts General Hospital Cancer Center.  Since sarcoma is such a rare disease, JHYSF is trying to raise public awareness about sarcoma, as well as provide resources to sarcoma patients and families who are recently diagnosed with this disease. A walk to support JHYSF is held on the first weekend of May each year.  

Michigan Cancer Centers with a Sarcoma Focus

University of Michigan Comprehensive Cancer Center
Located in Ann Arbor, Michigan, the UM Comprehensive Cancer Center is associated the UM's Medical School. On their website, they state, "The Center was established in 1986, and soon after was designated a "comprehensive" center by the National Cancer Institute. he U-M Cancer Center has more than 200 cancer clinicians and researchers. These specialists work together in multidisciplinary teams to rapidly bring new prevention, detection and treatment discoveries to more than 25 cancer care clinics."

Minnesota Support Groups and Organizations

Shoreview - Karen Wyckoff Rein-in-Sarcoma Foundation 
The Karen Wyckoff Rein-in-Sarcoma Foundation was started in 2001 by Karen Wyckoff shortly before her death from synovial sarcoma at age 25. RIS seeks to keep alive Karen's three-part mission of: (1) sponsoring research into the diagnosis, treatment and cure for sarcoma cancers; (2) increasing awareness of these cancers in the general public and the general medical care community; and (3) providing education and support to sarcoma patients, survivors and their loved ones. RIS has a close relationship with the sarcoma doctors at the University of Minnesota Cancer Center. Nearly 2,000 people have attended RIS' celebration/fund-raiser which is held annually in July at St. Paul's Como Park in Minnesota. 

North Carolina Cancer Centers with a Sarcoma Focus

Duke University Medical Center
The Duke Sarcoma Program at Duke University Medical Center is a multi-disciplinary team of physicians, nurses, and allied health professionals dedicated to the care and treatment of patients with sarcoma. From infants to seniors, this team of  professionals treat patients with both primary sarcomas of the bone and soft tissues,as well as metastatic sarcoma.. We provide state-of-the-art treatments including surgical oncology, adult and pediatric medical oncology and radiation oncology, in a multi-disciplinary clinical setting to offer patients the most effective care. Our specialists work closely together on basic scientific and clinical research in hopes of identifying improved detection and treatment of sarcoma. Duke University Medical Center is located in Durham, North Carolina.

New York State Cancer Centers with a Sarcoma Focus

Columbia Weill Cornell Cancer Center at the Herbert Irving Comprehensive Cancer Center
Located in New York City, the Columbia Weill Cornell Cancer Center is part of the Herbert Irving Comprehensive Cancer Center in the New York-Presbyterian complex, which forms the university hospitals for Columbia University and Cornell University. Their website states, "Columbia Weill Cornell Cancer Centers provide comprehensive care for children and adults with primary and metastatic bone and soft tissue tumors."

Memorial Sloan-Kettering Cancer Center (MSK or MSKCC)
Located in New York City, Memorial Sloan-Kettering Cancer Center (MSKCC) has been dealing in cancer treatment and care for over 100-years. Their website states, "Memorial Sloan-Kettering doctors generate more than half of the world's research publications on soft-tissue sarcomas and have probably the largest experience with these tumors of any medical group."

Roswell Park Cancer Institute (RPCI)
The Roswell Park Cancer Institute (RPCI) locate in Buffalo, New York, is a National Cancer Institute designated comprehensive cancer center. RPCI patients benefit from a customized, comprehensive care program developed by a multidisciplinary team of cancer specialists. The program addresses the medical, nutritional, emotional, and spiritual needs of each patient from diagnosis through treatment and rehabilitation, discharge and follow-up care. Roswell Park Cancer Institute’s (RPCI) experts in soft-tissue sarcoma include specialists in surgery, medical oncology, radiation oncology, diagnostic radiology, pathology and rehabilitation support. Treatment approaches for this disease include conservative operations, combined with radiation therapy and/or chemotherapy, which offer patients a high rate of tumor control while avoiding amputation.

Sarcoma Support Groups and Organizations

New York City - Kristen Ann Carr Fund
The Kristen Ann Carr Fund provides grants for cancer research and seeks to improve all aspects of cancer patient life with an emphasis on adolescents and young adults. The Kristen Ann Carr Fund honors the life of Kristen Ann Carr (1971 - 1993). Established at Kristen's request, the Fund continues in her spirit and convictions in its efforts to: (1) provide funding for research and treatment of sarcoma; (2) provide funding for the education of young physicians; and (3) improve the quality of cancer patient life.  

Ohio Cancer Centers with a Sarcoma Focus

The Arthur James Cancer Hospital at The Ohio State University
The Arthur James Cancer Hospital at The Ohio State University is the largest sarcoma program in Ohio and one of the largest in the Midwest. The hospital has a complete sarcoma program with all specialties including orthopedic oncology, surgical oncology, adult and pediatric medical oncology, plastic surgery, pathology, radiation oncology, and radiology. Physicians in the program take care of more than 175 new sarcoma patients each year and have thousands of patients in long term follow-up.

Ohio Support Groups and Organizations

Columbus - The James Cancer Hospital's Sarcoma Support Group
Meets the last Tuesday of the month from 6:00 to 7:30pm

Oregon Cancer Centers with a Sarcoma Focus

Oregon Health & Science University Sarcoma Program

Support Organizations

Northwest Sarcoma Foundation
The Northwest Sarcoma Foundation is intended to be a place of support and education for those who are living with a sarcoma and other rare bone tumor diseases. The site provides a general overview of sarcoma and its treatment, and then points to more comprehensive resources, which have been evaluated by a member of their staff. The Northwest Sarcoma Foundation primarily serves pediatric and adult groups for the Washington, Wyoming, Alaska, Montana and Idaho region of the Pacific Northwest. However, the site is for anyone looking for information pertaining to sarcoma and its treatment.

Pennsylvania Cancer Centers with a Sarcoma Focus

Fox Chase Cancer Center (FCCC)
Located in Philadelphia, Pennsylvania, Fox Chase Cancer Center (FCCC) is an independent, nonprofit institution devoted to improving cancer treatment and prevention. In 1904, the Fox Chase Cancer Center Hospital, which was then called the American Oncologic Hospital, became the country's first cancer hospital. The Center was formed in 1974 to unite the Hospital with the Institute for Cancer Research, founded in 1927.

Sarcoma Support Groups and Organizations

Pittsburgh - Brian Morden Foundation
The Brian Morden Foundation was created to honor Brian, a courageous 19 year old, who battled Ewing's Sarcoma for more than two years. He lost the battle on February 15, 2003, but his family, friends, and many others who only knew Brian by reputation have vowed to continue the fight against this horrible disease. The foundation has three goals: (1) fund research for the express purpose of finding a cure and/or better treatment for Ewing's Sarcoma; (2) provide funding to improve the quality of life for patients and staff on the Oncology service at Children's Hospital in Pittsburgh, PA,; and (3) provide funding for a "Brian Morden Memorial" higher education scholarship. 

South Carolina Support Groups and Organizations

Greenville: Sarcoma Support Group
Meets the 4th Monday of each month at 7:00pm

Texas Cancer Centers with a Sarcoma Focus

M. D. Anderson Cancer Center
Located in Houston, Texas, M. D. Anderson has built a "worldwide reputation for excellence in cancer patient care, research, education and prevention".  On their website, they state, "Patients at M. D. Anderson's Sarcoma Center have a five-year survival rate well above the national average, and an outstanding 80% rate for classical osteosarcoma.  Our center diagnoses, treats and manages sarcomas of the soft tissue and bone, using the latest technology available."

Sarcoma Support Groups and Organizations

Houston - Amschwand Sarcoma Cancer Foundation
After the loss of his mother, Kathryn, to sarcoma, in addition to his own 18-month battle with the disease, Tom Amschwand established the Amschwand Sarcoma Cancer Foundation (ASCF) for the purpose of educating the public about sarcoma, supporting those with the disease, and encouraging sarcoma-specific research. The site includes advice for those recently diagnosed, a list of some of the adjunctive cancer therapies available that may be helpful in complementing traditional therapies used to treat sarcoma, and a substantial list of resources and links. ASCF provides free short-term housing (one week or less) to sarcoma patients and/or their families who are traveling to Houston for treatment or medical appointments through its Shared Families program. ASCF has also developed a Sarcoma Survivor Notebook that helps patients be pro-active in their treatment, stay organized, and research their disease. 

Utah Cancer Centers with a Sarcoma Focus

Huntsman Cancer Institute (University of Utah)
Located in Salt Lake City, Utah, The Huntsman Cancer institute operates a hospital-based patient care center in association with the Health Sciences Center at the University of Utah. On their website, they state, "The Huntsman Cancer Institute Sarcoma Service, in addition to engaging in comprehensive clinical care, has ongoing, state of the art, basic science studies investigating the causes of sarcomas." 

Washington State Cancer Centers with a Sarcoma Focus

Seattle Cancer Care Alliance – Sarcoma Service
The Seattle Cancer Care Alliance (SCCA) is a partnership between three leading cancer centers: the Fred Hutchinson Cancer Research Center, UW Medicine, and Children's Hospital and Regional Medical Center. The Alliance’s Sarcoma Service, which began in 1986, offers sarcoma patients the best of the Pacific Northwest's world-class cancer research and patient-care practices. It sees about 500 adults and 200 children a year who are newly diagnosed with sarcomas of various types. The majority of its patients come from outside the Western Washington region. It offers a multidisciplinary approach to sarcoma treatment, including access to new treatments and procedures through clinical trials, innovative programs such as the Sarcoma PET Imaging Program, Sarcobase one of the first sarcoma patient registries in North America and the first at a cancer center, as well as overlapping pediatric and adult programs, to provide continuity of care to young patients who can continue to see the same doctors as they grow to adulthood.

Support Organizations

Northwest Sarcoma Foundation
The Northwest Sarcoma Foundation is intended to be a place of support and education for those who are living with a sarcoma and other rare bone tumor diseases. The site provides a general overview of sarcoma and its treatment, and then points to more comprehensive resources, which have been evaluated by a member of their staff. The Northwest Sarcoma Foundation primarily serves pediatric and adult groups for the Washington, Wyoming, Alaska, Montana and Idaho region of the Pacific Northwest. However, the site is for anyone looking for information pertaining to sarcoma and its treatment.

Australia Cancer Centers with a Sarcoma Focus

Peter MacCallum Cancer Centre
Sarcoma Services Team: At Peter Mac we have dedicated staff providing personalised integrated multidisciplinary treatment program delivered in a caring and supporting environment.

Sarcoma Support Groups and Organizations

Hannah's Chance Foundation
Hannah’s Chance Foundation aims to raise valuable funds for medical research into rare types of cancer, called sarcomas. There are various types of sarcomas, all of which are very aggressive and almost 50 per cent of sufferers do not survive.

Canada: Support Groups and Organizations

Toronto - Mount Sinai Hospital Sarcoma Patient Support
Meets the 2nd and 4th Tuesday of the month from 1:00 to 2:00pm

肉瘤诊疗中心

方志伟教授  天津医科大学附属肿瘤医院骨与软组织肿瘤科  天津  中国  300060

电子邮件

医院网址及科室网址: 中文版本请点击此处 (For English version, please click here)

电话：0086-22-23340123-3081, 0086-22-81351619, 0086-013612104718

 

宋金纲教授  天津医科大学附属肿瘤医院骨与软组织肿瘤科   天津   中国  300060

医院网址及科室网址: 中文版本请点击此处 (For English version, please click here)

电话：0086-22-23340123-3081, 0086-22-81351619, 0086-013920788981

 

杨吉龙博士   天津医科大学附属肿瘤医院骨与软组织肿瘤科   天津   中国  300060

电子邮件

医院网址及科室网址: 中文版本请点击此处 (For English version, please click here)

电话：0086-22-23340123-3081, 0086-013752727604

 

沈靖南教授 中山大学附属第一医院骨与软组织肿瘤科  广州  中国 510080

电子邮件 

科室网站：中文版本请点击此处

电话：020－87755766－8236

 

王晋副教授中山大学附属第一医院骨与软组织肿瘤科  广州  中国 510080

电子邮件

科室网站：中文版本请点击此处 

电话：020－87755766－8236

 

邹昌业博士中山大学附属第一医院骨与软组织肿瘤科  广州  中国 510080

电子邮件

科室网站：中文版本请点击此处 

电话：020－87755766－8236

 

Contact persons of the Tianjin Cancer Hospital (in English)

Prof. Fang Zhiwei, Department of Bone and Soft Tissue Tumor, Cancer Hospital, Tianjin Medical University, Tianjin, China, 300060. E-Mail
The Department of the Bone and Soft Tissue Tumor click here (中文版本请点击此处) Phone: 0086-22-23340123-3081, 0086-22-81351619, 0086-013612104718

Prof. Song Jingang,  Department of Bone and Soft Tissue tumor, Cancer Hospital, Tianjin Medical University, Tianjin, China, 300060
The Department of the Bone and Soft Tissue Tumor click here (中文版本请点击此处) Phone: 0086-22-23340123-3081, 0086-013920788981

Doctor Yang Jilong, Department of Bone and Soft Tissue Tumor, Cancer Hospital, Tianjin Medical University, Tianjin, China, 300060. E-Mail
The Department of the Bone and Soft Tissue Tumor click here (中文版本请点击此处) Phone: 0086-22-23340123-3081, 0086-013752727604

Contact persons at the First Affiliated Hospital of Sun Yat-Sen UniversitY (in English)

Prof. Jingnan Shen, Department of Musculoskeletal Oncology , The First Affiliated Hospital of Sun Yat-Sen University  Guangzhou China 510080. E-Mail
Website of Department of Musculoskeletal Oncology:中文版本请点击此处
Phone:0086-20-87755766-8236

Assistant Prof. Jin Wang, Department of Musculoskeletal Oncology , The First Affiliated Hospital of Sun Yat-Sen University  Guangzhou China 510080. E-Mail
Website of Department of Musculoskeletal Oncology: 中文版本请点击此处
Phone:0086-20-87755766-8236

Dr. Changye Zou, Department of Musculoskeletal Oncology , The First Affiliated Hospital of Sun Yat-Sen University  Guangzhou China 510080.
E-mail: zcy109@yahoo.com.cn
Website of Department of Musculoskeletal Oncology: 中文版本请点击此处
Phone:0086-20-87755766-8236

Centres de Traitement Spécialisés en Sarcome

Centre Léon Bérard
28, rue Laënnec - 69373 LYON Cedex 08
Téléphone : 04.78.78.28.28 - Télécopieur : 04.78.78.29.29
Email : clb@lyon.fnclcc.fr

Institut de cancérologie Gustave Roussy Villejuif
Rue Camille Desmoulins - 94805 VILLEJUIF Cedex
Téléphone : 01.42.11.42.11 - Télécopieur : 01.42.11.53.00
Email: roussy@igr.fr 

Institut Curie
26, rue d'Ulm 75231 - PARIS Cedex 05
Téléphone : 01.44.32.40.00 - Télécopieur : 01.44.32.41.19

Institut Bergonnié
180, rue de Saint-Genès/229,cour de l'Argonne - 33076 BORDEAUX Cedex
Téléphone : 05.56.33.33.33 - Télécopieur : 05.56.33.33.30
Email: bergonie@bergonie.org

Institut National du Cancer (INCa)

Associations de Patients Sarcome

Association SOS Desmoïde 
Créée en 1998, SOS DESMOIDE est une association française de patients et de médecins dont le premier objectif est de rompre l’isolement des patients atteints de tumeur desmoïde, mais aussi des soignants qui sont amenés à traiter cette maladie (oncologues, chirurgiens, gastro-entérologues, dermatologues, pédiatres. Son originalité est d’être fondée sur un partenariat avec des médecins et des patients, le secrétaire général de l’association étant un médecin, pour avancer sur le chemin de la connaissance des tumeurs desmoïdes. SOS DESMOIDE s’est également donné pour missions d’encourager et de soutenir la recherche médicale, d’améliorer les connaissances sur la tumeur desmoïde, de partager et de faire circuler l’information recueillie et d’informer et orienter les patients et leurs proches. Vous pouvez retrouver toutes ces informations sur la maladie et l'association ainsi que des contacts sur le site internet de SOS DESMOIDE. 

Jeunes Solidarité Cancer

Association Française des Patients du GIST  (Ensemble Contre Le GIST)

Globules Roses d'Anya France Sarcome

Sarcoma Advocacy Groups (English Descriptions)

Association SOS Desmoïde 
Created in 1998, this France-based organization aims at breaking patients isolation, collect and circulate knowledge about the disease, and stimulate research. This means, in particular, providing information and psychological support to patients; circulating data and initiating multi-disciplinary meetings of researchers and physicians; prompting new research programs; involving patients in the designing of programs and the collection of tissues. For more information and contacts visit our website at SOS DESMOIDE.

Weitere Informationen über Sarkome erhalten sie unter

• Innerer Klinik – Tumorforschung (Westdeutsches Tumorzentrum-Universitätsklinikum-Essen)
• Chirurgische Klinik, Universitätsklinikum Mannheim gGmbH
• KID Deutsches Krebsforschungszentrum Heidelberg
• Das Lebenshaus
• GIST-Selbsthilfegruppe Schweiz
• www.sarkome.de 
• www.sarkom-info.de  

Centri di cura per Sarcomi

Associazione Italiana Ematologia Oncologia Pediatrica

Dipartimento di Pediatria di Padova 

Istituto Ortopedici Rizzoli

Istituto Nazionale Tumori Milano

ISG (Italian Sarcoma Group) Versione Italiana

Gruppi Dedicati ai Sarcomi

Assocazione Italiana Gist (A.I.G.) 

NOTE: Some of the European Paediatric Soft Tissue Sarcoma Study Group (EgSSG) coordinating structure is based in Italy.

肉腫専門病院

国立病院機構北海道がんセンター

(National Hospital Organization Hokkaido Cancer Center)

札幌医科大学

(Sapporo Medical University)

新潟県立がんセンター新潟病院

(Niigata Cancer Center Hospital)

国立がんセンター中央病院

(National Cancer Center)

癌研有明病院

(The Cancer Institute Hospital of JFCR)

千葉県立がんセンター

(Chiba Cancer Center)

静岡県立がんセンター

(Shizuoka Cancer Center)

愛知県立がんセンター

(Aichi Cancer Center)

金沢大学医学部附属病院

(Kanazawa University Hospita)l

京都大学医学部附属病院

(Kyoto University Hospital)

大阪府立成人病センター

(Osaka Medical Center for Cancer and Cardiovascular Diseases)

岡山大学病院

(Okayama University Hospital

九州大学医学部附属病院

(Kyushu University Hospital )

 

肉腫支援グループ

CureSarcoma

GIST研究会

(Japanese Study Group of GIST)

骨軟部肉腫治療研究会

(Japanese Musculoskeletal Oncology Group)

がん情報サイト

Voor meer informatie over sarcomas ga naar

Nederlandse kanker instituut (Dutch Cancer Institute)

KWF Kankerbestrijding 

Stichting Jongeren en Kanker (SJK)

Stichting Nationaal Fonds tegen Kanker

Kinderoncologisch Centrum Rotterdam (KOCR)

Stichting Diagnose Kanker (SDK)

Oncoline

Centra zajmujące się mięsakami

Centrum Onkologii-Instytut im. Sklodowskiej-Curie
Klinika Nowotworów Tkanek Miekkich i Kosci
ul. Roentgena 5 02-781 Warszawa
Fax: (22) 643 97 91
Dr. Piotr Rutkowski
E-Mail

Grupy rzeczników pacjentów z mięsakami

Poniżej adres Polskiej Unii Onkologii
Korzystając z okazji pragniemy Ci podziękować za pomoc w tworzeniu stowarzyszenia. Nasza organizacja nosi nazwę "Stowarzyszenie Pomocy Chorym Na Mięsaki". Do całkowitego zakończenia pracy nad stowarzyszeniem brakuje nam kilku pieczątek z urzędów. Gdy wysztko będzie gotowe prześlemy Ci adres stowarzyszenia.

Stowarzyszenie Pomocy Chorym na Mięsaki "SARCOMA"
03-286 Warszawa, ul. Malborska 14 m.5
Telefon: 608 335 326
Kamil Dolecki, President
E-Mail

Stowarzyszenie Pomocy Chorym na GIST
01 652 Warszawa, ul. Potocka 14
Telefon: (22) 832 21 03
Stan Kulisz, President
E-Mail

Centros para el tratamiento de Sarcomas  ― Defensa del Paciente / Grupos legales de Sarcoma

En España, coexiste el Sistema Nacional de Salud con una red importante de hospitales privados. Aunque existen centros privados para el tratamiento del cáncer de mucho prestigio (Clínica Universitaria de Navarra, Hospital de San Rafael, etc), la mayor parte de los casos de cáncer, adultos o pediátricos, son tratados en la red de Hospitales públicos, donde, con frecuencia, se encuentra la mejor combinación de medios, tecnología y enfoques específicos multidisciplinares (cirujanos, oncólogos, radiólogos, patólogos, enfermería,...) para el tratamiento del cáncer.

• Grupo de Estudio de Sarcomas (Spanish Group for Research on Sarcomas)
• Asociación Infantil Oncológica de la Comunidad de Madrid (ASION)
• Sociedad Española de Oncología Médica (SEOM)
• Centro Nacional de Investigaciones Oncológicas (CNIO)
• Grupo de Estudio de los Tumores del Aparato Locomotor
• Sociedad Española de Oncología Pediatrica
• Asociación Española Contra el Cáncer (AECC)
• Federación Española de Padres de Niños con Cáncer (FEPNC)
• Fundación de Oncología Infantil Enriqueta Villavecchia

United Kingdom

There is a list of local support groups maintained by Sarcoma UK here.

Cure Alveolar Soft Part Sarcoma International (iCureASPS)

iCureASPS aims to bring together Alveolar Soft Part Sarcoma (ASPS) patients, their families and friends who have a shared interest in finding a cure for ASPS. We actively look for institutions and laboratories that are engaged in research aimed to find a cure for ASPS and support them by funds and shipments of fresh or frozen ASPS tumors from patients who agree to donate their tumors for research. The CureASPS website serves as a platform that provides updated information about the research and therapies for ASPS patients and their medical caregivers. Using this knowledge, patients can have better decisions regarding their ASPS treatments. Using the online Forum, members can share their experiences and get information and group support from the ASPS community all over the world. The information network generated through patients’ communication helps to collect valuable information about this very rare disease and is a key to the success of finding the best available treatments and ultimately to finding a cure.   

The Alliance Against Alveolar Soft Part Sarcoma (TAAASPS)

The TAAASPS website was developed to communicate information about the very rare type of cancer called Alveolar Soft Part Sarcoma (ASPS or ASP-sarcoma). The TAAASPS website contains information about a charitable foundation that was formed to promote advocacy and research to benefit patients with alveolar soft part sarcoma. Among other things the site contains a discussion of Treatment Options and supports a Discussion Forum

Chordoma Support Group at MSN Groups

An independent, international, online support group for all those affected by Chordoma to offer each other friendship, support and information.

Chondrosarcoma Online Support Group

This online support group was formed to "gather pertinent information, increase knowledge, sort scientific fact from anecdotal fiction, and make well-informed decisions. Discussion takes place in a private discussion boards that can only be seen by members. The group is open to chondrosarcoma patients, their family, friends, caregivers, and medical professionals with an interest in chondrosarcoma. NOTE: Those with mesnechymal chondrosarcoma should join the next group.

Mesenchymal Chondrosarcoma Support Group

This group was established to provide information and to offer love and support to those who suffer with this terrible disease.

Adult Bone Cancer Survivors (ABC Survivors)

ABC Survivors provides information and support for patients, survivors and loved-ones dealing with sarcoma of the bone & joints. Those looking for information and hope for the bone cancer experience will find more than 100 detailed survivor stories here. Those who would like to interact with other adult patients, survivors and caregivers are invited to join the private discussion forum called the ABC Café. This active community is a unique mix of a support group and a social club. Patients and survivors create all of the content, from humorous to serious and inspiring. Discussions about medical topics and life changes create a sense of unity and eliminate the loneliness that comes with a rare cancer diagnosis. 

Desmoid Tumor Support at ACOR

This group provides a network of friends who are dealing with issues related to desmoid tumors. An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are "posted" by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an "online discussion" of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting.

Desmoid Tumor Research Foundation

The Desmoid Tumor Research Foundation was co-founded by Marlene Portnoy and Jeanne Whiting as a response to their frustration with the lack of information and research of desmoid tumors. Jeanne is currently battling the disease and Marlene’s husband had a desmoid tumor resected in March 2004. The mission of the foundation is: (1) to fund research related to the diagnosis and treatment of desmoid tumors; (2) Provide informational support for patients and their families. The Desmoid Tumor Research Foundation will soon have a website available. 

Ewing's Sarcoma Support at ACOR

This group provides a network of friends who are dealing with issues related to Ewing's sarcoma. An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are "posted" by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an "online discussion" of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting.

Adult Bone Cancer Survivors (ABC Survivors)

ABC Survivors provides information and support for patients, survivors and loved-ones dealing with sarcoma of the bone & joints. Those looking for information and hope for the bone cancer experience will find more than 100 detailed survivor stories here. Those who would like to interact with other adult patients, survivors and caregivers are invited to join the private discussion forum called the ABC Café. This active community is a unique mix of a support group and a social club. Patients and survivors create all of the content, from humorous to serious and inspiring. Discussions about medical topics and life changes create a sense of unity and eliminate the loneliness that comes with a rare cancer diagnosis. 

Brian Morden Foundation

The Brian Morden Foundation was created to honor Brian, a courageous 19 year old, who battled Ewing's Sarcoma for more than two years. He lost the battle on February 15, 2003, but his family, friends, and many others who only knew Brian by reputation have vowed to continue the fight against this horrible disease. The foundation has three goals: (1) fund research for the express purpose of finding a cure and/or better treatment for Ewing's Sarcoma; (2) provide funding to improve the quality of life for patients and staff on the Oncology service at Children's Hospital in Pittsburgh, PA,; and (3) provide funding for a "Brian Morden Memorial" higher education scholarship. 

Ewing's Sarcoma Photo Gallery (esbabies)

A site where people can share the pictures and a biography of someone who has or has had Ewing's sarcoma. The site also has e-mail and postal addresses of many people in the Ewing’s sarcoma community. 

 

GIST Cancer Research Fund (GCRF)

After being diagnosed with gastrointestinal stromal tumor (GIST), Tania Stutman and her husband Robert created the GIST Cancer Research Fund (GCRF) with the help of Dr. Ephraim Casper of the Memorial Sloan Kettering Cancer Center. The Mission of the GIST Cancer Research Fund is: (1) To create funding to support research which is vital to the long-term survival of those coping with GIST; (2) To provide patients and practitioners with more data on GIST; (3) To provide information about GIST to the international community; (4) To influence the U.S. Legislature in implementing policies towards coverage of oral drugs; (5) To work side-by-side with medical facilities, creating GIST tumor tissue banks locally and internationally; (6) To provide support for patients and families coping with GIST; and (7) To fund further research that creates methods of early detection for GIST. Ninety seven percent of all the funds raised by GCRF go directly for research on GIST cancer. Their website contains information on recent fundraisers, GIST clinical trial updates, links to recent GIST research results, as well as other patient education resources and links.  

GIST Support International(GSI)

GIST Support International (GSI) is an all-volunteer, non-profit organization dedicated to outreach and education of patients affected by Gastrointestinal Stromal Tumor (GIST), and their families and friends. GSI is committed to the concept of free communication and open membership through its email based community. GSI maintains a comprehensive web site with scientific articles, news updates, clinical trial search engine, and survivor stories. GSI promotes and encourages ongoing research of Gastrointestinal Stromal Tumor. For more information please visit them on their website.

Life Raft Group

The Life Raft Group is a non-profit organization providing "support, through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor)." GIST belongs to the general class of cancers called sarcomas. Membership in the Life Raft Group is free and is open to GIST patients and their families. The "Treatment" section of their website contains information about clinical trials and an extensive medical directory of Sarcoma/GIST specialists.

Leiomyosarcoma Support at ACOR

This group provides a network of friends who are dealing with issues related to leiomyosarcoma. An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are "posted" by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an "online discussion" of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting.

LeioMyoSarcoma (LMS) 

The LeioMyoSarcoma (LMS) website is a significant resource to those having to deal with this disease. It contains a number of useful tutorials for the newly diagnosed, discusses disease management, treatment techniques and treatments by metastatic site, and gives advice on coping with leiomyosarcoma.  The "How do you know who to trust" points on the the LMS links page is well worth reading by everyone doing web searches for any type of disease. The site also contains an extensive glossary of medical terms.  

Leiomyosarcoma Direct Research Foundation(LMSdr or LMSarcoma Direct Research Foundation)

The mission of the Leiomyosarcoma Direct Research Foundation is to assure the development of the means to cure and control the disease known as leiomyosarcoma (LMS) and to improve the quality of life for those with this disease until the cure is found. The foundation attempts to unite together leiomyosarcoma patients and friends and family members interested in helping leiomyosarcoma patients, in order that the LMS community can work together in one representative voice. Among the patient resources on its website, the Leiomyosarcoma Direct Research Foundation maintains an extensive list of clinical trials for LMS and solid tumors. The website also maintains a page called Patient to Patient where LMS patients can learn from the experiences of others who have already undergone chemotherapies, surgeries and other medical procedures. The Leiomyosarcoma Direct Research Foundation website also maintains a current Treatments page which attempts to keep an updated list of the various potential treatments that could be available for an LMS patient. In addition to patient services, the Leiomyosarcoma Direct Research Foundation represents the LMS community at CTOS, ASCO and other major medical functions to advocate for more research toward helping find the cure for leiomyosarcoma. 

National Leiomyosarcoma Foundation (NLMSF)

The mission of the NLMSF is to provide leadership in supporting research of Leiomyosarcoma, improving treatment outcomes of those affected by this disease as well as fostering awareness in the medical community and general public. NLMSF was formed in 2001 and since then has helped fund several research projects directed toward LMS. NLMSF has also worked to set up a tissue bank for LMS. The foundation hosts a yearly event called HUGFEST which is a 2 day gathering of LMS patients and caregivers sharing stories, information and help. 

Uterine Leiomyosarcoma & Hormone Therapy

This group discusses the use of hormone therapies, mainly aromatase inhibitors (AI), for those who have positive hormone receptors on their tumor tissues. Topics are STRICTLY limited to the subject of ULMS + hormone treatments: how to get receptor testing, medications and their side effects, current research, clinical trials, advocacy & resources, and personal experiences.

Liposarcoma Support at ACOR

This group provides a network of friends who are dealing with issues related to liposarcoma. An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are "posted" by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an "online discussion" of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting.

Osteosarcoma Support at ACOR

This group provides a network of friends who are dealing with issues related to osteosarcoma. An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are "posted" by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an "online discussion" of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting.

Adult Bone Cancer Survivors (ABC Survivors)

ABC Survivors provides information and support for patients, survivors and loved-ones dealing with sarcoma of the bone & joints. Those looking for information and hope for the bone cancer experience will find more than 100 detailed survivor stories here. Those who would like to interact with other adult patients, survivors and caregivers are invited to join the private discussion forum called the ABC Café. This active community is a unique mix of a support group and a social club. Patients and survivors create all of the content, from humorous to serious and inspiring. Discussions about medical topics and life changes create a sense of unity and eliminate the loneliness that comes with a rare cancer diagnosis. 

FOSTER Foundation

In June of 2001, Stacey Leondis, then a student at Garden City High School, New York, established the Foster Foundation. The FOSTER (Fighting Osteo Sarcoma Through Everyday Research) Foundation is an organization whose purpose is to support the research of osteosarcoma, a rare form of bone cancer that primarily affects children. Stacey's goal is to assist the fight against osteosarcoma by collecting funds and putting them towards promising research projects. The foundation has established a trust that assists in funding much needed basic research. These funds are awarded annually as grants to research groups. All funds received by the foundation are tax exempt and are used exclusively to further research. Stacey is currently a junior at Yale University majoring in biology. 

Rhabdomyosarcoma Support at ACOR

This group provides a network of friends who are dealing with issues related to rhabdomyosarcoma. An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are "posted" by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an "online discussion" of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting.

Online Sarcoma Support Groups & Forums

Sarcoma Support at ACOR

This group provides a network of friends who are dealing with issues related to sarcoma. An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are "posted" by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an "online discussion" of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting.

Sarcoma Alliance Support Forum

The Sarcoma Alliance is "striving to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, guidance, education and support." They maintain a support forum for patients, caregivers and friends.

Planet Cancer Sarcomas Group

Planet Cancer is a community of young adults with cancer—the ages between "pediatric" and "geriatric." Planet Cancer focuses on this underserved cancer population. It is a place to share insights, explore fears, laugh, or even, as they put it, "give the finger to cancer with others who just plain get it." While it does not deny the dark side of cancer, Planet Cancer firmly believes that laughter and light can turn up in the strangest places. 

Sarcoma-UK E-mail Support List

The sarcoma email list is provided by Sarcoma UK as a mutual support for sarcoma patients and carers. It is primarily aimed at UK residents, whether being treated in the NHS or privately. There is also a list for carers that allow carers and family of sarcoma patients to share experience and ideas in a supportive and private place.

Online Sarcoma Organizations

Amschwand Sarcoma Cancer Foundation

After the loss of his mother, Kathryn, to sarcoma, in addition to his own 18-month battle with the disease, Tom Amschwand established the Amschwand Sarcoma Cancer Foundation (ASCF) for the purpose of educating the public about sarcoma, supporting those with the disease, and encouraging sarcoma-specific research. The site includes advice for those recently diagnosed, a list of some of the adjunctive cancer therapies available that may be helpful in complementing traditional therapies used to treat sarcoma, and a substantial list of resources and links. ASCF provides free short-term housing (one week or less) to sarcoma patients and/or their families who are traveling to Houston for treatment or medical appointments through its Shared Families program. ASCF has also developed a Sarcoma Survivor Notebook that helps patients be pro-active in their treatment, stay organized, and research their disease.   

BeatSarcoma

Our mission is to raise funds for sarcoma-specific research and to support anyone who is dealing with sarcoma.

Jennifer Hunter Yates Sarcoma Foundation (JHYSF)

JHYSF was created in honor of Jennifer Hunter Yates, who died at the age of 33 after battling sarcoma for 17 months. JHYSF supports sarcoma research, sarcoma patient and family education and sarcoma family financial support at the Massachusetts General Hospital Cancer Center.  Since sarcoma is such a rare disease, JHYSF is trying to raise public awareness about sarcoma, as well as provide resources to sarcoma patients and families who are recently diagnosed with this disease. A walk to support JHYSF is held on the first weekend of May each year.  

Karen Wyckoff Rein-in-Sarcoma Foundation 

The Karen Wyckoff Rein-in-Sarcoma Foundation was started in 2001 by Karen Wyckoff shortly before her death from synovial sarcoma at age 25. RIS seeks to keep alive Karen's three-part mission of: (1) sponsoring research into the diagnosis, treatment and cure for sarcoma cancers; (2) increasing awareness of these cancers in the general public and the general medical care community; and (3) providing education and support to sarcoma patients, survivors and their loved ones. RIS has a close relationship with the sarcoma doctors at the University of Minnesota Cancer Center. Nearly 2,000 people have attended RIS' celebration/fund-raiser which is held annually in July at St. Paul's Como Park in Minnesota. 

Kristen Ann Carr Fund

The Kristen Ann Carr Fund provides grants for cancer research and seeks to improve all aspects of cancer patient life with an emphasis on adolescents and young adults. The Kristen Ann Carr Fund honors the life of Kristen Ann Carr (1971 - 1993). Established at Kristen's request, the Fund continues in her spirit and convictions in its efforts to: (1) provide funding for research and treatment of sarcoma; (2) provide funding for the education of young physicians; and (3) improve the quality of cancer patient life.  

Liddy Shriver Sarcoma Initiative

The Liddy Shriver Sarcoma Initiative is an all-volunteer organization dedicated to improving the lives of people dealing with sarcoma. The Initiative increases global public awareness of sarcoma, raises funds to award research grants, and provides support and timely information to sarcoma patients, their families, and medical professionals. These efforts are achieved through collaboration with numerous individuals and organizations that share a similar vision.

Northwest Sarcoma Foundation

The Northwest Sarcoma Foundation is intended to be a place of support and education for those who are living with a sarcoma and other rare bone tumor diseases.  The site provides a general overview of sarcoma and its treatment, and then points to more comprehensive resources, which have been evaluated by a member of their staff. The Northwest Sarcoma Foundation primarily serves pediatric and adult groups for the Washington, Wyoming, Alaska, Montana and Idaho region of the Pacific Northwest. However, the site is for anyone looking for information pertaining to sarcoma and its treatment.  

Sarcoma Alliance (SA)

The Sarcoma Alliance is "striving to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, guidance, education and support." They have extensive guidance, education and support resources on their website, including excellent resources for the newly diagnosed. They also have an online discussion board and a financial assistance program. 

Sarcoma Foundation of America (SFA)

The mission of the Sarcoma Foundation of America is to act as an advocate for increased research to find new and better therapies with which to treat patients with sarcoma. The SFA raises its own funds to provide research grants to sarcoma researchers. The SFA also interacts with public (NCI, FDA, etc.), private for-profit (pharmaceutical companies, etc.) and private non-profit (e.g., philanthropic foundations) organizations to raise awareness of the treatment needs of sarcoma patients. Its site includes a list of patient resources, upcoming and previous fund raisers, and information for researchers on how to apply for SFA research grants.  

Sarcoma-UK

This page is a resource for United Kingdom patients diagnosed with a soft tissue sarcoma. It provides links to web pages around the world which can offer information and advice to patients. The "Sarcoma UK" newsletter was first published in April 1993 to provide advice and support to UK sarcoma patients.  

Soft Tissue and Bone Sarcoma Group (STBSG of the EORTC)

STBSG is one of the working groups of the European Organization for Research and Treatment of Cancer (EORTC). The aims of the EORTC are to "develop, conduct, coordinate, and stimulate laboratory and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patients’ quality of life." The objectives of the STBSG are to "develop, stimulate and co-ordinate studies on all aspects of the treatment of soft tissue sarcomas (STS) as well as to organize congresses, symposia and conferences to promote these studies. The STBSG has played a major role in the development of the Response Evaluation Criteria in Solid Tumors (RECIST) criteria. STBSG's assurance program involves a "strict membership policy, central review of responses, central review of pathology, use of a systemic therapy checklist and on site monitoring visit." The STBSG currently has members from 56 institutions from 14 countries.

The Special Fund 

This organization is committed to research, education, advocacy, and support for those diagnosed with sarcoma cancer.

The Swing Away Foundation

The mission of "The Swing Away Foundation" is: (a) to enable sarcoma patients accessibility to leading treatment facilities previously unavailable due to the high costs for medical procedures and extensive travel; (b) further research and experimental treatments through donations to participating medical centers; and (c) create a network of educational information sharing and medical and travel resources for patients in an effort to save others from what we have experienced

Endometrial Stromal Sarcoma Yahoo Support Group

This group is for women who have dealt with the rare uterine cancer- endometrial stromal sarcoma- low or high grade. To join the list, you must have a valid email.

Hand in Hand: For Sarcoma Second Opinions

The Suzanne R. Leider Memorial Assistance Fund was created to support sarcoma patients in finding the treatment they need. Hand in Hand offers financial assistance for second opinion consultations by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses. Although modest, Hand in Hand enables us to touch as many patient lives as possible. Grants from the fund are awarded each quarter. Each applicant is eligible for up to $500 in grants per year.

Sarcoma Patient Housing Program in Houston

The Amschwand Sarcoma Cancer Foundation has recently expanded its popular corporate apartment program for sarcoma cancer patients. ASCF's corporate apartments in Houston, Texas, are offered to sarcoma patients and/or their families free of charge. These apartments allow sarcoma patients from around the world to receive treatment at MD Anderson Cancer Center.

Legal Guide for the Seriously Ill

The onset of a serious illness or injury can affect much more than a person’s health. Knowing what steps to take to get your financial and legal affairs in order is often vitally important not only to you, but to your loved ones. This comprehensive document provides "seven key steps to get your affairs in order."

Long-Term Follow-Up Guidelines

The Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers were developed as a collaborative effort of the Nursing Discipline and the Late Effects Committee and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. The purpose of these guidelines is to provide recommendations for screening and management of late effects that may potentially arise as a result of therapeutic exposures used during treatment for pediatric malignancies.

CANCERcare Assist

A national non-profit organization whose mission is to provide free professional help to people with all types of cancer through counseling, education, information and referral and direct financial assistance. Individual counseling and support groups offered online, by telephone, or at on site locations. Limited financial assistance is available for such items as transportation, child care, home care, and pain medication. 

Hand in Hand: For Sarcoma Second Opinions

The Suzanne R. Leider Memorial Assistance Fund was created to support sarcoma patients in finding the treatment they need. Hand in Hand offers financial assistance for second opinion consultations by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses. Although modest, Hand in Hand enables us to touch as many patient lives as possible. Grants from the fund are awarded each quarter. Each applicant is eligible for up to $500 in grants per year.

Partnership for Prescription Assistance

This is a service offered by the Pharmaceutical Research and Manufacturers of America (PhRMA, see entry below). PhRMA leading research-based pharmaceutical and biotechnology companies in the United States. The site has a special section, New Medicines in Development, that can be explored for a extensive array of diseases. HelpingPatients.org helps direct patients to the Patient Assistance Programs that will best help them. The site contains a directory of all the member companies that conduct these programs and the medicines that are covered. It also describes how to request assistance. Programs supported by PhRMA members helped 5.5 million underinsured or uninsured patients to obtain more than 14 million prescriptions in 2002.  This online service is free and completely confidential.

Patient Advocate Foundation's Co-Pay Relief

The Patient Advocate Foundation's Co-Pay Relief (CPR) Program provides direct co-payment assistance for pharmaceutical products to insured Americans who financially and medically qualify. The program offers personal service to all patients through the use of CPR call counselors. The call counselor works directly with the patient as well as with the provider of care to obtain necessary medical, insurance and income information to advance the application in an expeditious manner. Upon approval, payments are made: to the doctor, to the pharmacy, or to the patient directly. Sarcoma patients are eligible for the program, and the program holds all information received from users of the program as confidential.

Stephen T. Marchello Scholarship Foundation

The Stephen T. Marchello Scholarship Foundation is a nonprofit organization which gives post-secondary scholarships to current year high school graduates who are survivors of childhood cancers in the states of Colorado, Montana, California, and Arizona. The site also contains a list of cancer survivor scholarship funds with no restrictions as to residency of applicant.

Additional Financial Assistance

Housing Assistance

Amschwand Foundation Housing Program (Houston, TX)
Believe in Tomorrow Housing
Hope Lodge (A Home Away from Home)
Joe's House - A Guide for Cancer Patients
Miracle House
National Association of Hospital Hospitality Houses
Ronald McDonald House Charities

Scholarship Opportunities

Travel Assistance

Angel Flight America
Angel Flight Europe
CancerCare Helping Hand Resource Guide
Colgon Air, Inc.
Corporate Angel Network
Lifeline Pilots
Mercy Medical Airlift
Miles for Kids in Need (AA)
National Patient Air Transport Helpline
The Air Care Alliance
Finding Help For Transportation

Dream and Wish Foundations

Cancer Warriors

Among the mission of Cancer Warriors is to support much needed research of rare childhood cancers, allowing better development of treatments to assist in allowing more children the chance at a cure. Educate the public by providing the best links we have found relating to childhood cancer so anyone wanting more information can be directed to tons of informative websites relating to all childhood cancers.

Caring Cabin

The Children’s Cancer Association’s Caring Cabin was created to provide families a serene escape from the sterile environment and painful procedures of hospitals. The beautiful custom-designed cabin is nestled among 24 acres of peaceful wooded land in Pacific City, Oregon. The cabin features its own private lake and is just minutes from the beach. The Caring Cabin is fully equipped to meet children’s medical needs and is available at no cost to families. The Cabin features: 3,900 square feet of space, four private bedrooms, a meditation pavilion, a large stone fireplace, fishing dock, beautiful nature pathways, family game room and private sitting areas, wheelchair accessibility and is medically equipped. Requirements for families to stay at the Cabin include: (1) a child/adolescent receiving active treatment for cancer, or facing a terminal illness; (2) confirmed diagnosis by a medical professional; (3) treatment is occurring in Oregon or SW Washington; (4) family is responsible for travel and personal expenses to and from Pacific City, Oregon; and (5) family is responsible for their child's medical needs. No medical or support staff is on site at the Cabin. Check the website for availability.

Carol Jean Cancer Foundation

This foundation offers free recreational support programs for kids with cancer and their families throughout the Maryland, DC and Northern Virginia area. Its primary program, called "Camp Friendship," is a special, week-long residential camp for children with cancer, where kids with cancer can just be kids. Other programs are offered for teens, siblings, and parents. 

Children and Parents Against Cancer

Children and Parents Against Cancer is a national Russian non-profit organization founded in 1994 and based in Saint Petersburg. The organization unites parents of children with cancer, parents of childhood cancer survivors and bereaved parents. It advocates for the rights of children with cancer; guaranteeing access to the most advanced treatment and rehabilitation opportunities for every child with cancer. The organization also provides free psychological help to children with cancer and their families.

CureSearch  

CureSearch is the umbrella group that unites the Children's Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF). These two organizations have related and complementary missions. The mission of COG is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. At more than 200 COG member institutions worldwide, dedicated physicians, nurses and scientists are conducting clinical trials and performing research to identify cancer causes and pioneer treatments and cures. The mission of NCCF is to support this lifesaving research by raising public awareness and funds through awareness, legislative and fundraising programs, which directly contribute to increasing survival rates. On the CureSearch website, families, patients, and health care providers can find information that addresses the specific needs of patients, parents, and families; learn about COG research initiatives and clinical trials; and discover how to raise awareness about childhood cancers, including bone and soft tissue sarcomas that strike children, adolescents, and young adults such as Ewing's sarcoma, osteosarcoma, and rhabdomyosarcoma. 

The Cure Our Children Foundation (Barry Sugarman's website)

Also listed under our Drug Information category, this is a centralized information site to assist parents, families and caregivers of children who have cancer and other life threatening diseases. With a particular emphasis on Ewing’s Sarcoma, this site will assist in learning about a child's disease, current treatments, new and developing treatments, and holistic and complimentary treatment options. The site also directs the readers to doctors, hospitals and other experts specializing in particular disease treatment and to pharmaceutical manufacturers.

The National Children’s Cancer Society

The National Children’s Cancer Society (NCCS), a non-profit, tax-exempt organization, is one of the largest financial aid organizations for children with cancer in the United States. It was founded during the effort to push bone marrow transplant, which initially was not covered by insurance, from its infancy to a widely acceptable form of treatment. Since its founding the NCCS has provided over $32 million in direct financial assistance to more than 14,000 children, and supplemental assistance through educational camps, programs and materials to thousands more. The NCCS now works with more than 200 hospitals and pediatric oncology units throughout the United States. In addition to providing direct financial assistance, NCCS provides educational materials designed for children about cancer, an online message board community, a quarterly newsletter, and a wealth of links to other cancer resources for children.

Pediatric Proton Foundation

Founders Susan and Jim Ralston discovered the benefits of proton therapy in 2007 when their two-year old son was diagnosed with spinal Ewing’s sarcoma. Their mission in founding the Pediatric Proton Foundation is a simple one: to provide education, advocacy, and assistance to families in need.

SIBLINKS

SIBLINKS is a website for "young people who have or have had a family member affected by cancer. SIBLINKS is for young people aged 13-25 years who are siblings or sons and daughters of people affected by cancer."

The Starlight Foundation

Dedicated to the creation and distribution of programs that empower seriously ill children and teens to address the challenges that accompany prolonged illness – and give them back their childhoods. Programs include a private online community connecting over 30,000 kids living with chronic and serious illness. Kids can chat, email, read bulletin boards, find friends, learn about healthcare conditions, surf web sites and play games... all in a private and safe environment just for them.

Additional Resources for the Journey

Make sure to check the Financial Assistance Links! There are organizations dedicated to providing scholarships and financial asstiance for children with cancer and their families.

Planet Cancer

Planet Cancer is a community of young adults with cancer—the ages between "pediatric" and "geriatric." Planet Cancer focuses on this underserved cancer population. It is a place to share insights, explore fears, laugh, or even, as they put it, "give the finger to cancer with others who just plain get it." While it does not deny the dark side of cancer, Planet Cancer firmly believes that laughter and light can turn up in the strangest places. 

Teens Living with Cancer  

A website for teens with cancer who have lots of living to do. A place where teens can get straight information on cancer and how to deal with cancer issues. Stories from real teens with cancer, and a place where teens can contact other teens through online chat. Also has sections for Moms and Dads, siblings, and friends.

SIBLINKS

SIBLINKS is a website for "young people who have or have had a family member affected by cancer. SIBLINKS is for young people aged 13-25 years who are siblings or sons and daughters of people affected by cancer."

Young Cancer Spouses

This group provides support and resources for young married couples who are facing cancer.

Long-Term Follow-Up Guidelines

The Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers were developed as a collaborative effort of the Nursing Discipline and the Late Effects Committee and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. The purpose of these guidelines is to provide recommendations for screening and management of late effects that may potentially arise as a result of therapeutic exposures used during treatment for pediatric malignancies.

Additional Resources for the Journey

Make sure to check the Financial Assistance Links! There are organizations dedicated to providing scholarships and financial asstiance for teens and young adults.

CancerCare

A national non-profit organization whose mission is to provide free professional help to people with all types of cancer through counseling, education, information and referral and direct financial assistance. Individual counseling and support groups offered online, by telephone, or at on site locations. Limited financial assistance is available for such items as transportation, child care, home care, and pain medication. 

Cancer Hope Network

Provides free, confidential, one-on-one support to people with cancer and their families. Matches patients with trained volunteers who have themselves undergone a similar experience.

Cancer-Pain.org

Cancer-Pain.org has been developed by ACOR (Association of Cancer Online Resources) with input and advice from patients, caregivers and an Advisory Board of health care professionals dedicated to providing the most advanced cancer pain relief. Their aim is to help cancer patients receive the pain treatment they deserve. The site offers in-depth information on understanding cancer pain, cancer paint treatments, a care giver’s guide, and an “ask the experts” section.

CancerSymptoms.org

The Oncology Nursing Society provides this website designed for patients and caregivers to learn about and manage each of six common cancer treatment symptoms: fatigue, anorexia, pain, depression, neutropenia, and cognitive dysfunction. The "Learn" section of each symptom tab provides quick and easy access to information that explains the causes and effects of each treatment-related symptom. Helpful articles explain the symptoms in more detail. The "Manage" section of each symptom tab provides helpful ideas on how to control or minimize the effects of that symptom. Read helpful "what to do" lists that can make a huge difference in how you feel daily. Visitors to the site can also send a question via a secure and confidential email about any of the symptoms presented on the website, and receive a private answer from an oncology nurse within two business days.

Cancer Survivors Project

The Cancer Survivors Project (CSP) is an organized, international community of long-term cancer survivors and their friends working together to improve the lives of children and adults after cancer. CSP is committed to making available information regarding physiological and psychosocial late effects of cancer treatment, preventive care protocols, and appropriate health care. Their website provides a long term survivors email list as a way for survivors, their friends and family, and health care professionals to share information, advice and hope about the emotional and health issues associated with long term survivorship. The archives of the List can be searched, and questions may be posed to the group. While the list does not claim to offer medical advice, the insights and experiences of other survivors have often been invaluable in finding appropriate care. The website also contains a list of clinics that all see long term cancer survivor care, a reading list directed to long term survivors, and personal stories of survivors.

CaringBridge

CaringBridge is a nonprofit organization, offering free Web pages to those receiving care. CaringBridge has grown steadily since 1997 and by the beginning of 2003 had hosted more than 10,000 personalized CaringBridge pages, with more than 33 million visits, and more than 1.4 million guestbook entries. CaringBridge was developed using a unique grassroots approach. This service has developed ties with individuals, the medical community and corporate organizations through word of mouth. Those who visit a CaringBridge page are undeniably impacted. CaringBridge's mission is to bring together a global community of care, powered by the love of family and friends in an easy, accessible and private way.

ChemoAngels

Chemo Angels is a volunteer organization dedicated to adding a ray of sunshine to the lives of those undergoing treatment for cancer. They believe that people who are going through the physical, emotional and mental rigors of chemotherapy, radiation, surgery, or other cancer therapies deserve some pampering and special treatment! Patients who are in active treatment only are "adopted" by both a Chemo Angel and a Card Angel who, through cards, cheerful notes, and small, inexpensive gifts, will support and encourage the patient for the duration of treatment. A patient application form will give your Angel an idea as to what sort of "surprises" would brighten your day and lighten your heart. Patients are not allowed to request money, gift certificates, or any sort of financial aid from their Angels. And recipients are not allowed to discuss any type of financial hardship with their Angels. The focus of the program is on the patient’s health and spirit. The program maintains the privacy of its participants. Many of the Angels are cancer survivors themselves, but most are not. To become and Angel, one must be 100% dedicated and able to follow through with this gift of love.

Coping with Cancer (National Institutes of Health)

Information about complications/side effects of cancer and its treatment, as well as information on treatment-related nutritional and emotional concerns, supportive care, clinical trials, and end-of-life issues.

Gilda's Club

The mission of Gilda’s Club is to provide meeting places where men, women and children living with cancer and their families and friends can join with others to build emotional and social support as a supplement to medical care. Free of charge and nonprofit, Gilda’s Club offers support and networking groups, lectures, workshops and social events in a nonresidential, homelike setting. Named in honor of comedienne Gilda Radner, there are now some 17 Gilda’s Clubs located throughout the U.S. and Canada. 

Lainie's Angels – Training Parent Advocates

Lainie's Angels is a non-profit foundation started by the parents of Lainie Afendoulis, a twelve-year-old girl who recently passed away after a two-year battle with Ewing's Sarcoma. The main purpose of Lainie's Angels is to continue to train and place Parent Advocates in hospitals around the United States. Parent Advocates are parents or family members of terminally ill child cancer victims who make themselves available as compassionate, knowledgeable resources to other families going through the illness of a child. Lainie’s Angels, still in its formative years, has already made an impact through partnerships with the University of Rochester Medical Center and the Children’s Memorial Hospital of Chicago and for parents and families in the New York and New Jersey area.

National Coalition for Cancer Survivorship (NCCS)

The National Coalition for Cancer Survivorship is a patient-led advocacy organization working on behalf of people with all types of cancer and their families. The NCCS makes available the "Cancer Survival Toolbox," which is a free, audio program that teaches skills that can help people with cancer meet the challenges of their illness. The Toolbox includes a Basic Skills set that covers six important topics: communicating, finding information, making decisions, solving problems, negotiating and standing up for your rights. In addition, the Toolbox includes additional programs that cover topics for older persons, finding ways to pay for care and caring for the caregiver.

R. A. Bloch Cancer Foundation Guide for Cancer Supporters

Various information, articles and links for the patient to best fight cancer. A guide for cancer supporters, and a state by state register of cancer survivors for various types of cancer.

Rare Cancer Alliance

The Rare Cancer Alliance’s (RCA) primary purpose is to disseminate information and provide support to all pediatric (childhood) and adult rare cancer patients. In the Forums you will find people just like you - patients and survivors.  You can read some of their stories in the Childhood Cancer and Adult Rare Cancer support section. Its members are people who have had to go through the process of wading through information (or lack of it) for their own cancer. RCA's secondary purpose is to offer a consolidated venue to raise awareness and funding for rare cancer research, which seldom benefits from donations made to general cancer research organizations. RCA welcomes new information on other research funds. The site is maintained by a rare cancer survivor.

Shared Experience Cancer Support

This site contains a searchable library of the experiences of over 1900 cancer patients. The library is searchable by categories such as cancer type, diagnosis, chemo drugs, treatment and quality of life. A visitor to the site can also add their own experience to the library, read patient diaries, exchange messages, and participate in chat rooms.

The Wellness Community

A national non-profit organization dedicated to providing free emotional support, education and hope for people with cancer and their loved ones. Through participation in professionally led support groups, educational workshops and mind/body programs utilizing the Patient Active Concept, people affected by cancer can learn vital skills to regain control, reduce feelings of isolation and restore hope—regardless of the stage of disease. With 20 facilities nationwide, The Virtual Wellness Community on the Internet and international centers in Tel Aviv and Tokyo, The Wellness Community provides a home-like setting for people living with cancer and their loved ones to connect with and learn from each other. All programs at The Wellness Community are free of charge.

Vital Options

Vital Options® International TeleSupport® Cancer Network is a not-for-profit cancer communications, support and advocacy organization whose mission is to facilitate a global cancer dialogue by using communications technology to reach every person touched by cancer. It provides a variety of cancer communications projects for people of all ages and cancer types, as well as for their families, friends, physicians and healthcare providers. In particular, The Group Room® radio show is a weekly syndicated cancer talk show which is simulcast on the World Wide Web and XM Satellite. This innovative cancer talk radio program allows people from throughout the world to meet, talk, exchange information, support one another and speak in a unified voice about the cancer experience. The Group Room® radio show is broadcast live on Sundays (check the website for details). Past broadcasts of The Group Room® are available for listening at any time, as are featured interviews with cancer experts. 

Additional Resources for the Journey