The RARE Registry has become the largest direct-to-patient registry for individuals with acral, cutaneous, and mucosal melanoma. Since launching in October 2022, nearly 700 participants across the acral, mucosal, and cutaneous melanoma subtypes have joined the registry, marking both an important milestone in building a powerful and growing resource for the melanoma community, and in advancing research for these rare and often difficult-to-treat melanoma subtypes.
This effort was driven by the challenging experiences that patients with rare melanomas face. Rare melanoma subtypes remain underrepresented and underfunded in research and suffer from limited awareness of their progression, treatment, and impact on patient lives. RARE exists to help change this.
We are especially grateful to the patients and caregivers who inspired and helped shape RARE from the very beginning. Your voices and experiences continue to guide RARE’s growth and impact—each individual’s story holds the power to make a meaningful difference in the future of patient care in melanoma, especially for the rare melanoma subtypes.
As the registry continues to grow, so does its potential to transform our understanding of melanoma and improve patient care. We are truly appreciative to every member of the RARE community for making this important initiative possible.
Sincerely,
Joan Levy and Jessica Scales
MRA Chief Science Officer
MRA Associate Director,
Rare Melanoma Research
