RARE®, a registry for patients with acral and mucosal melanoma, provides a free, interactive, web and mobile-friendly tool to share information and experiences, disease history, advance research and awareness, and get potential matches to clinical trials.
Your story—the story of your health, of your history, of your experiences— hold power: the power to inform, the power to connect, and the power to drive research forward for rare melanoma subtypes.
“In working with MRA to build the registry, for the first time I met another patient who like me that had a toe resected because of acral melanoma. Now through the RARE Registry, I’m able to meet many other people who have shared similar experiences about what it’s like to face this condition.” MRA is committed to providing comfort and understanding within their community.
David Marx
"Patients were in desperate need of more research for both mucosal and acral melanoma, we spoke with dozens of doctors, hospitals, academic research institutions and organizations who felt our endeavor was incredibly worthwhile. However, all agreed that there was a need to share data broadly. By working with MRA, its medical advisors, we now have the ability to pool and collect data in our RARE registry, this will be available to researchers all over the world! This is exactly what our rare melanoma communities asked for and are receiving, we are forever grateful to the MRA for their dedication to this project that will help find new treatment approaches and save lives.
Julie Dewey
“Mucosal melanoma is a very rare malignancy. Once diagnosed, many of those early conversations between patients and doctors are dominated by questions without answers. RARE will collect data from hundreds of patients about their cancer experience across time, from their first symptom and diagnosis through treatments and outcomes. Not only will this registry be a resource to better define screening and treatment practices today, but it will also provide a point of connection for scientists and patients to come together to reach for a better tomorrow for the mucosal melanoma community.”
JB Ward
“Information learned through the RARE Registry will help accelerate research into the risk factors, genomics, and epidemiology of acral and mucosal melanoma while also helping us to better understand the unique experiences of patients who face these rare melanoma subtypes.”
Sapna Patel, MD – MD Anderson Cancer Center
RARE® is an application that will collect data from acral and mucosal melanoma patients or designated caregivers via website with the goals of advancing medical treatment and quality of life.
Participants who maintain consent will receive notification about clinical trials for which they are potentially eligible based on their type of melanoma, sites of metastatic disease, and other data entered into RARE®.
The RARE Melanoma Registry is an initiative led by the Melanoma Research Alliance. MRA was formed in 2007 and is the largest non-profit funder of melanoma research worldwide. Since its founding, MRA has committed over $150 million, and leveraged over $415 million from outside sources, to fund life-saving melanoma research needed to achieve its mission of ending suffering and death due to melanoma.
MRA thanks many generous supporters who have helped make the registry possible, including the Anna-Maria and Stephen Kellen Foundation, Alkermes, and Merck.
CureMelanoma.org