Be Seen. Be Heard. BE EMPOWERED.

The RARE Registry is a new direct-to-patient effort to advance research focused on acral and mucosal melanoma – two rare and difficult-to-treat subtypes of the disease – as well as cutaneous melanoma, for which nearly half of patients do not benefit from current treatment options. Using the easy-to-use RARE Registry website, participants will provide information about their demographics, diagnosis, treatment history, lifestyle and quality of life factors. All information collected by the registry will be de-identified and made available through an open-access portal that will give clinicians and researchers the information they need to inform and advance future research efforts.  

The RARE Registry goes where you go – available on your computer, smart phone or tablet. The RARE Registry offers unique opportunities and features:

• Interact and receive ongoing updates and relevant info from the Melanoma Research Alliance (MRA)
• Collaborate with clinicians and researchers through exclusive ask the expert sessions, blog posts, and more
• Find and connect with other patients who know what it’s like to have acral, mucosal, or cutaneous melanoma
• Share information about your experience with melanoma – from your treatments to your quality-of-life – to benefit research and other patients

Once Registered, you will be able to:

• Get insights into acral, mucosal, and cutaneous melanoma from other patients in the RARE Registry community
• Get clinical trial alerts based on your melanoma subtype, treatment journey, and more
• Dig deep into the de-identified, open-access research portal