ESUN

An Opportunity to Help the Global Sarcoma Community

By Bruce Shriver, PhD
Editor-in-Chief, ESUN

In an effort to better understand how patients, caregivers, and survivors use the Internet for sarcoma support, the Liddy Shriver Sarcoma is conducting an anonymous online survey. The survey will be open for new participants until June 30th.

We believe that this project will be a useful resource for the entire sarcoma community, and we would appreciate your help.

Doctors and Nurses: Please share the survey's online address, SarcomaSurvey.org, with your patients, survivors and their families and encourage them to participate. Everyone who has actively sought online sarcoma information and support (for themselves or their loved ones) is invited to participate. Anonymous data from the survey, along with a comprehensive report, will be published in ESUN.

Patients, their Caregivers and their Supporters (Worldwide): The first thing you can do is to take the survey! Then, think of someone who has impacted your online sarcoma experience and send a personal message asking him or her to take the survey as well. Your anonymous answers will help to tell the story of the sarcoma experience in the digital age, and Sarcoma specialists and advocates will benefit from reading your insights.

Advocates and Support Group Leaders: This survey will be beneficial for groups that focus on specific sarcoma subtypes as well as groups that deal with all sarcomas. The survey invites your members to share how your community helps them and to tell doctors and advocates about their needs. The resulting report should provide valuable feedback and ideas for leaders in advocacy and support.

More Information About the Survey

Survey questions cover important issues, including: "What should doctors knows about the Internet's value to sarcoma patients and their families?" and "What should new patients and caregivers know about using the Internet as a health resource?"

The Initiative's privacy policy applies to this survey. We are committed to protecting the privacy of survey participants.

Thank you for your help with this important project.