Nonprofit Support Group for Rare Bone Cancers Forms in Ann Arbor

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The Sarcoma Coalition, a collaboration of nonprofits, has formed to support those dealing with sarcoma, a rare bone and bone-related tissue cancer.

The Sarcoma Coalition, a nonprofit collaboration of sarcoma advocacy organizations from around the country, Tuesday announced its formation in Ann Arbor. Sarcomas are cancers of the bony skeleton as well as muscle and other tissues attached to, supporting, or joining those bones.

Because sarcoma is a rare form of cancer — the disease accounts for 1 percent of adult cancers and 15 percent of childhood cancers — it can be difficult for physicians to diagnose and for patients to find experts and resources. The coalition’s goal is to provide resources and support for those dealing with sarcoma, from patients and their families to allies in the research and medical communities.

“Because of the rarity of this cancer, many people — including primary care medical personnel — are unfamiliar with sarcoma,” says Pete Wyckoff, co-chair of the Sarcoma Coalition steering committee and co-founder of Rein in Sarcoma.

Each coalition member organization offers its own areas of advocacy, resources, and services. A list of these organizations and more information is available at sarcomacoalition.org.

“Our Sarcoma Coalition member organizations are working together to support sarcoma patients, educate the public and medical community, and collaborate to fund research to find better treatments and ultimately a cure for this rare cancer,” says Denise Reinke, co-chair of the Sarcoma Coalition steering committee, and president and CEO of SARC.

The 16 members of the coalition are Angiosarcoma Awareness Inc., Desmoid Tumor Research Foundation, EHE Foundation, Focus on Rhabdo, Leiomyosarcoma Support and Direct Research Foundation, Life Raft Group, LMS – National Leiomyosarcoma Foundation, Northwest Sarcoma Foundation, QuadW Foundation, Rein in Sarcoma, SARC, Sarcoma Alliance, Sarcoma Foundation of America, Slifka Foundation, Summers Way Foundation, and The Paula Takacs Foundation for Sarcoma Research. The coalition is overseen by its steering committee, which also includes Annie Achee, Lisa DeYoung, and Rich Rumsey.

Nonprofits that are interested in joining the coalition can email sarcomacoalition@sarctrials.org or contact leaders through the website.

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