How the RARE Registry Works

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. 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, & more
  • Find and connect with other patients who know what it’s like to have acral or mucosal 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 and mucosal 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

Coming Soon: Launching first in the United States, RARE will be available in other countries later in 2023