RARE captures a unique and growing body of knowledge about the lived experiences of patients with acral, mucosal, and cutaneous melanomas—insights that are often not captured through research on these patient populations, especially for the rare melanoma subtypes.
RARE aims to expand by enrolling new participants and actively engaging current participants to complete registry surveys, both of which will strengthen the insights generated from RARE and enable the launch of new and more powerful research studies. To get involved in the MRA’s RARE Registry, please visit raremelanoma.org or contact us at rare@curemelanoma.org.
The future of RARE depends on a growing, engaged community of patients and caregivers. In 2026 and beyond, we are advancing several key initiatives to support the mission of RARE—to deepen our understanding of melanoma and improve patient outcomes.
“Rare melanomas have remained relatively in the shadows for a long time. With so few cases per year, there hasn’t been a pathway to collecting enough information about these conditions. The RARE Registry has provided an opportunity to do meaningful research for rare melanomas.”
RARE is starting its first peer-reviewed research study focused on quality of life for individuals with acral, mucosal, and cutaneous melanoma, with additional comprehensive studies to follow. Sharing your lived experiences through RARE is pivotal in driving this work. If there are specific research questions or topics you would like to see explored, we encourage you to share your ideas with us by reaching out to rare@curemelanoma.org.
We are also introducing a new electronic health record (EHR) integration feature on RARE’s web portal that will enable participants to securely connect their medical records with their RARE survey data. This will enable more detailed research on disease progression, treatments, and outcomes—amplifying the impact of each and every participant’s contribution to RARE.
Lastly, we have launched the MRA Melanoma Biorepository, which now provides patients the opportunity to donate their melanoma tumor and normal tissues from past or upcoming procedures (biopsies and surgeries). Donated tissues will support approved research studies previously out of reach, including studies on predictive and prognostic biomarkers, as well as, treatments and treatment resistance mechanisms in melanoma. Participants enrolled in RARE may also choose to have their registry data linked with their donated samples. To learn more, visit curemelanoma.org/biorepository.
MRA is developing a data analytics platform that will provide researchers and clinicians with access to de-identified, aggregate data from RARE to facilitate studies on melanoma that aim to improve patient care and outcomes. Feel free to contact MRA with ideas on future surveys to incorporate into RARE to collect additional data. Please let us know if there are ways that you could help us spread the word about RARE so we can continue to build a more complete understanding of melanoma, especially the rare subtypes that remain underrepresented in research.
Collectively, these efforts will strengthen RARE as an important and ongoing resource for the melanoma community and help shape the future of research and care for patients with melanoma.
