Support groups or resources present information, provide comfort, teach coping skills, help reduce anxiety, and provide a place for sarcoma patients to share common concerns and emotional support. Whether you take advantage of the online support resources or visit your local support group, help is available. And although your cancer may be rare, know that you are not alone. At any one time, more than 50,000 patients, their families, caregivers, and doctors are fighting this disease. The following online resources were helpful to Eric’s family:
Note: The links available in this section are provided for educational purposes only. The Eric D. Davis Sarcoma Foundation does not endorse or verify the contents of these materials.
The best offense is a strong defense and having access to the most accurate information and resources is key in your sarcoma fight. Because sarcoma is a rare cancer, it is important that patients see an oncologist specializing in sarcoma or visit a sarcoma center. While this list isn’t intended to be a full representation, it does provide facilities who have experience with sarcoma. If you know of a hospital or medical center not listed, we would love to hear from you.
EDDF financial grants help cover travel related expenses for adults with a sarcoma or rare cancer diagnosis
Financial grants for sarcoma patients to receive second opinion consultations.
Financial grants for young adults with a rare cancer diagnosis.
The American Cancer Society provides helpful information including a section on sarcoma to help you get through every step on your journey.
The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
Provides a listing of clinical trials being conducted across the United States for soft tissue sarcoma.
If you have been diagnosed with any type of sarcoma, take an active role in research that may benefit you and others living with a similar diagnosis. The 23andMe Sarcoma Research Initiative uses only a bit of saliva to assist in uncovering new treatments and causes for sarcoma. Request your saliva collection kit and learn more about this ground-breaking initiative.
Database of National Cancer Institute’s (NCI) sponsored clinical trials across the country.
Comprehensive database that lists patient assistance programs, as well as practical tools, news, and articles.
Lists thousands of places to stay across the country near hospitals and treatments centers that offer a discount for traveling patients and their loved ones.
Sarcoma Support Groups
Memorial Sloan-Kettering Cancer Center’s Sarcoma Support Group provides an opportunity for patients with sarcoma to talk to each other in a live, online, confidential forum. This group is open to the public.
Online and private social network for those living with illness, newly diagnosed or caring for someone with a medical condition.
Online forum for sarcoma patients to find emotional support, encouragement and information.
Online community dedicated to sarcoma and another community dedicated to hundreds of rare diseases(each rare disease is broken down into its own community).
Online forum focused on soft tissue sarcoma. It is designed to link patients, families, friends and caregivers for support and encouragement.
Web-based patient support forum powered by Ben’s Friends. It is managed by volunteer moderators who have been touched by Synovial Sarcoma.
Yahoo online group dedicated to women with Uterine Leiomyosarcoma (ULMS). This forum is specifically limited to the subject of ULMS and hormone treatments.
This group is for patients, survivors or loved ones who want to share information, support and stories about Chondrosarcoma.
Yahoo online group set up for those affected by Mesenchymal Chondrosarcoma.
Rare Cancer Support
Place for patients and caregivers to trade information, stories and more on rare forms of cancer.
Yahoo group designed for the spouses/partners of cancer patients to offer support to each other. It is meant for those under 40.
Live community set up to support people whose lives have been impacted by cancer.
Online place where siblings of those battling cancer (mostly teens) can post artwork, essays, stories and more.
Supports end stage cancer patients by providing assistance with costs for clinical trial participation