SARCOMA ALLIANCE

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support. Sarcoma does not discriminate by age, gender, or race. As a rare diagnosis, this is a community who has special needs and requires special attention. Survival depends upon it. The Sarcoma Alliance is working to address the needs of this special community and to get those affected by sarcoma the necessary resources and attention they deserve.

The Sarcoma Alliance offers a number of programs to further our mission to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support. These programs include:

Peer-to-Peer Network: The mission of the Sarcoma Alliance Peer-to-Peer Network is to facilitate positive relationships between individuals affected by sarcoma so that they may find emotional support, encouragement and information. The Peer-to-Peer Network began in 2005 and consists of individuals affected by sarcoma – Survivors, Caregivers and Loved ones – who wish to correspond with others in the sarcoma community. Currently the program has individuals from all 50 states and over 20 countries. It has both men and woman from teenagers to over 60 years old including survivors and caregivers. The Sarcoma Alliance matches peers based on the specific needs of the individuals, and the peers correspond on terms they each agree upon. Sarcoma Alliance staff are available to help participants experience positive matches and to update their participation when needs evolve.

Hand in Hand: The Suzanne Renée Leider Memorial Assistance Fund: The Assistance Fund was created to support sarcoma patients in finding the treatment they need. This program offers financial assistance for second opinion consultations by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses. Grants have been given to women and men in every age group in almost every state and for every type of sarcoma. Grants are awarded without a “means test” to reassure those affected by sarcoma that they are not alone.

List of Sarcoma Centers: Because sarcomas are rare, it is important to find physicians who have experience with this disease. The Sarcoma Alliance created a list of criteria to be considered a Sarcoma Center, and review applicant medical centers for inclusion in our list of approved centers. This allows patients to easily seek out specialists with the comfort that all listed centers have been reviewed and approved by the Alliance.

Support Groups: The Sarcoma Alliance offers a number of support group resources, including social media support platforms, hosting in-person support groups, providing a list of in-person support groups available across the United States and beyond, and through a discussion board and twice-weekly chat on our website.

Educational Website Content: The Sarcoma Alliance is always adding to our informational website, which often acts as a point of first contact for newly diagnosed sarcoma patients seeking information. The website includes a variety of topics, including information on sarcoma subtypes, financial assistance, and clinical trials.

Sarcoma Exchange: an educational event designed for sarcoma patients, survivors, caregivers, family members, patient advocates, and medical specialists to meet one another and exchange information about current therapies and resources.

The Sarcoma Alliance is the only national 501(c)(3) nonprofit organization with the sole mission of providing education, guidance, and support to those affected by sarcoma. Founded in 1999, we are a well respected member of the sarcoma advocacy community. Our board of directors is a working board, dedicating their time and energy toward the mission of the Sarcoma Alliance. This board is brought together by their unique professional skills and connection to sarcoma, and includes medical oncologists and sarcoma survivors. The Sarcoma Alliance also has a Medical Advisory Board, consisting of esteemed physicians in the sarcoma community. They work closely with our talented staff to ensure our ability to provide accurate and comprehensive scientific information. We also work collaboratively with other advocacy groups, always committed to furthering causes of the sarcoma community, and send our staff to sarcoma conferences worldwide to stay up-to-date on current treatments and issues affecting sarcoma patients and caregivers.

As outlined above, we have made substantial strides in providing essential resources to the sarcoma community, but there is always more work to be done. We will continue to promote proper diagnoses and treatment for the rare, and often misdiagnosed, disease. We will continue to work with social workers and other support sources to make sure the sarcoma community is able to easily access our resources. We will continue to advocate for the disease in a world where rare diseases often get lost in the mix. And we will continue to improve upon current programs, and create new programs as needed, to best provide education, guidance, and support to those affected by sarcoma.