RARE Registry Report 2026
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Acknowledgements

Acknowledgements

The MRA recognizes that the RARE Registry is built upon the willingness of patients to share their lived experiences and melanoma journeys. We sincerely thank the patients who have generously contributed their time and lived experiences to make this important work possible.

We are especially grateful to the RARE patient advisors, whose perspectives and advocacy helped to shape and guide the registry from its earliest stages, and to the RARE scientific advisors, whose expertise in these melanoma subtypes has been instrumental in expanding the RARE Registry’s scope, depth, and long-term vision.

RARE Oversight Committee Scientific
Advisors

  • Maryam Asgari, MD, MPH — University of Colorado Anschutz School of Medicine
  • Boris Bastian, MD, PhD — University of California San Francisco
  • Elizabeth Buchbinder, MD — Massachusetts General Hospital
  • Richard Carvajal, MD — Northwell Health
  • Kasey Couts, PhD — University of Colorado Anschutz School of Medicine
  • Jason Luke, MD — Strand Therapeutics, Inc.
  • Sapna Patel, MD — University of Colorado Anschutz School of Medicine
  • Vito Rebecca, PhD — Johns Hopkins University
  • Yevgeniy ‘Eugene’ Semenov, MD, MS — Massachusetts General Hospital
  • Alexander Shoushtari, MD — Memorial Sloan Kettering Cancer Center
  • Iwei Yeh, MD, PhD — University of California San Francisco

RARE Principal Investigator

  • Joan Levy, PhD — MRA Chief Science Officer

Registry Staff

  • Joan Levy, PhD — MRA Chief Science Officer
  • Jessica Scales, PhD — MRA Associate Director, Rare Melanoma Research

Many thanks to prior MRA staff involved in the inception and launch of the RARE Registry: Marc Hurlbert, PhD; Rachel Fisher, PhD; Cody Barnett, MPH; Nicholas Starink, MPH

Report Contributors

  • Joan Levy, PhD — MRA Chief Science Officer‍
  • Jessica Scales, PhD — MRA Associate Director, Rare Melanoma Research
  • Precious Ngnosse, BS — MRA Science Intern
  • Dana Deighton, BA — MRA Director, Communications and Engagement
  • Renee Orcione, BA — MRA Associate Director, Communications and Engagement

The MRA also acknowledges the generous contributions of its supporters who have played a key role in making the RARE Registry possible, including the Anna-Maria and Stephen Kellen Foundation, Alkermes, and Merck. Additionally, RARE receives support from the Office of the Assistant Secretary of Defense for Health Affairs through the Rare Cancers Research Program under Award No. W81XWH2210768.

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