Sarcoma Support Resources
Links to supportive resources are located throughout our website. Those that are especially helpful are featured on the sarcoma subtype pages and in the Learn about Sarcoma articles. The following additional resources may be helpful for those who are dealing with sarcoma.
Online Support Groups
This group provides an opportunity for patients and supporters to connect online and to learn about exciting sarcoma research, new articles, events and projects.
- Support Groups for Sarcoma Subtypes: Choose your subtype to the left and look in the "Stories and Support" section to find support groups for people with a specific diagnosis.
- Live Online Sarcoma Support Group: Facilitated by a social worker at Memorial Sloan-Kettering
- Sarcoma Support E-mail List at ACOR: An ACOR "Mailing List" is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other.
- Sarcoma Alliance Support Forum: The Sarcoma Alliance maintains 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."
- Sarcoma-UK E-mail Support List: The sarcoma email list is provided by Sarcoma UK and 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.
California Support Groups
- In Los Angeles: Cedars-Sinai's Sarcoma Support Group
Meets the third Wednesday of each month from 12:00 to 1:30pm.
- In Redando Beach: Sarcoma Alliance Networking Group
Meets the 2nd Saturday at 11:00am at the Wellness Community, South Bay Cities.
Georgia Support Groups
- Atlanta: Emory Winship Cancer Institute's Sarcoma Support Group
Meets the 3rd Wednesday of the month from 6:30 to 8:00pm
Massachusetts Support Groups
- Boston: Dana Farber Cancer Institute's Sarcoma Support Group
Support group for sarcoma patients and family members. The group meets in Smith 330 from 12:30-1:30pm on the first Monday of each month (with the exception of September 2013, when they will meet on the second Monday). Parking is validated in the Dana-Farber Yawkey Garage. Registration is required. Call Larissa Hewitt, LICSW at 617-582-7548 to register or for more information.
Ohio Support Groups
- Columbus: The James Cancer Hospital's Sarcoma Support Group
Meets the last Tuesday of the month from 6:00 to 7:30pm
South Carolina Support Groups
- Greenville: Sarcoma Support Group
Meets the 4th Monday of each month at 7:00pm
Canada Support Groups
- Toronto: Mount Sinai Hospital Sarcoma Patient Support
Meets the 2nd and 4th Tuesday of the month from 1:00 to 2:00pm
United Kingdom Support Groups
- There is a list of local support groups maintained by Sarcoma UK here.
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.
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.
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.
Thei Mission of the Patient Advocate Foundation is to provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses. The Patient Advocate Foundation also runs the 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. 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.
A program of the Cancer Survivors' Fund, this fund reduces financial hardship on families by providing young adults with prosthetic limbs.
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.n
Additional Financial Assistance
- Clayton Dabney Foundation for Kids with Cancer
- Cure Our Children Foundation Financial Assistance Page
- Drug Assistance Programs from Pharmaceutical Companies
- First Hand Foundation
- Heroes for Children
- Hill-Burton Free & Reduced Cost Health Care
- Insure Kids Now
- Katie Beckett Program
- Kelly Anne Dolan Memorial Fund
- Medicaid: State by State Descriptions & Plans
- National Children's Cancer Society
- Novartis Patient Assistance Program
- Take My Hand Project
- Taking Charge of Money Matters
- 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
- Brian Morden Memorial Scholarship
- Cancer Survivors' Fund
- Cure Our Children Foundation Scholarship Information
- FastWeb (Matching Students to Scholarships)
- Patient Advocate Foundation
- Ped-Onc Resource Center
- Stephen T. Marchello Scholarship Foundation
- The Kyle Lee Foundation
- The SAM Fund
- Ulman Cancer Fund for Young Adults National College Scholarship Program
- Air Care Alliance
- Angel Flight America
- Colgon Air, Inc.
- Corporate Angel Network
- Lifeline Pilots
- Mercy Medical Airlift
- Miles for Kids in Need (AA)
- National Patient Air Transport Helpline
- Patient AirLift Services (East Coast)
Dream and Wish Foundations
- Chef David's Kids
- Believe in Tomorrow Children's Foundation
- Dial A Dream (UK)
- Dream Factory
- Dream Foundation
- Kid's Wish Network
- Make A Wish
- Memories of Love
- Ped-Onc Resource Center
- Sunshine Foundation
- Twilight Wish Foundation (for seniors)
- United Special Sportsman Alliance
- Willow Foundation (UK, young adults)
Resources for Children
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.
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.
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.
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 (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.
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.
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
- Camp Mak-A-Dream
- Camp Sunshine
- Cancer Kids
- Children's Cancer Web
- Comfort Zone Camp (for grieving children)
- The Silver Lining Foundation
Make sure to check the Financial Assistance Links!
There are organizations dedicated to providing scholarships and financial assistance for children with cancer and their families.
Resources for Young Adults
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.
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.
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
- Camp Mak-A-Dream
- Group Loop (Teens Talk Cancer Online)
- I'm Too Young For This
- Livestrong Young Adult Alliance
- Stowe Weekend of Hope
- Survivors-Follow-Up Clinics
Make sure to check the Financial Assistance Links!
There are organizations dedicated to providing scholarships and financial assistance for teens and young adults.
Copyright © 2012 Liddy Shriver Sarcoma Initiative.