The MRA’s RARE Registry was inspired by and developed in close collaboration with a community of rare melanoma patient advocates and caregivers, whose lived experiences helped shape its vision and priorities. From its earliest stages, the concept and design of RARE was informed by what this patient community identified as most needed: greater representation in research, a deeper understanding of patient experiences, and a stronger emphasis on quality of life alongside clinical outcomes.
To ensure these priorities remain central as RARE continues to enroll participants and advance its mission, RARE established an Oversight Committee composed of patients and caregivers, alongside a multidisciplinary group of medical advisors, including dermatologists, pathologists, oncologists, surgeons, and scientists, with experience in these melanoma subtypes.
Together, this collaborative structure ensures that RARE continues to reflect both the patient perspective and the evolving needs of the scientific and medical communities, fostering research that is both patient-centered and clinically impactful.
MRA is incredibly grateful for the continued support of each and every member of the Oversight Committee in helping RARE achieve its mission, especially our patient advisors:
Uveal (or Ocular) melanoma is another rare and aggressive melanoma subtype that develops from melanocytes in the uveal tract of the eye. Patients with uveal melanoma are encouraged to participate in established ocular melanoma registries, including through A Cure In Sight and the Melanoma Research Foundation.
