Nearly 90% of all melanomas are cutaneous melanomas, which largely develop on sun-exposed skin. The remaining melanomas comprise three rare melanoma subtypes, including acral, mucosal, and uveal (or ocular) melanoma.
These rare melanoma subtypes have unique challenges compared to cutaneous melanomas: they are diagnosed at later stages, possess distinct molecular features and biology, respond poorly to current immunotherapies, and are underrepresented in clinical research.
The Melanoma Research Alliance (MRA) has made advancing rare melanoma research a priority by making strategic investments to accelerate scientific discovery for rare melanomas and address the unmet clinical needs of patients diagnosed with these rare melanoma subtypes. Read below to learn about the ways MRA is supporting basic, translational, and clinical research for rare melanomas.
MRA has launched several rare melanoma initiatives and grant-funding programs to support research aimed at discovering new treatment options and improving clinical care for individuals with rare melanomas.
MRA sponsors the largest direct-to-patient registry called RARE (raremelanoma.org) for patients with acral, mucosal, and cutaneous melanoma. Launched in 2022, the mission of RARE is to advance knowledge of these melanoma subtypes through the collection of real-world data.
Participants of RARE complete surveys centered on demographics, disease and treatment history, genetics and tumor biomarkers, overall health and lifestyle, and quality of life. As rare melanomas are often underrepresented in clinical research, RARE provides real-world data to improve our understanding of melanoma risk factors, the impact of disease and treatment on quality of life, biomarker identification, and opportunities to improve clinical care and treatment strategies for patients with melanoma.
Presently, RARE participants can share their medical records, including pathology and test reports, through the RARE Registry portal, and soon, participants will have the ability to share their electronic health records.
Read the RARE Registry’s 2026 Data Report entitled “Patient Voices Empowering Research”.
For patients with uveal melanoma, MRA encourages participation in established ocular melanoma registries through A Cure In Sight and the Melanoma Research Foundation.
The MRA Melanoma Biorepository, launched in 2025, is a patient-directed effort designed to collect high-quality tissue samples from patients with melanoma and share them with qualified researchers to help accelerate translational and clinical studies across melanoma subtypes, including acral, mucosal, and cutaneous melanoma.
The biorepository addresses a critical need in the melanoma research community, which is providing researchers access to tissue samples that are needed to support scientific studies on the discovery of new drug targets, biomarkers, and treatments for acral, mucosal, and cutaneous melanoma.
Multiple types of samples are collected by the MRA Melanoma Biorepository, including tumor and normal tissue from future or previous surgeries or biopsies, cheek swabs, and blood.
For patients, participation in the MRA Melanoma Biorepository is designed to be a simple process, involving two steps:
Step 1: Enrollment biorepository@curemelanoma.org and consent, plus a brief questionnaire to collect demographics and clinical history.
Step 2: Tissue Collection. Once enrolled, MRA biorepository staff coordinates with the patient’s clinical team to obtain the donated tissue. Tissue collection kits are sent to the patient’s clinical team who then transfer the collected sample to the biorepository at the University of Colorado Anshutz Medical Campus.
Learn more about enrollment and how patient-donated tissue samples are stored at the MRA Melanoma Biorepository and distributed to qualified researchers.
To accelerate rare melanoma preclinical research, MRA developed three virtual model catalogs for acral, mucosal, and uveal melanoma. The catalogs aggregate available cell lines and patient-derived tumors grown in mice from institutions worldwide and select commercial sources to provide researchers with a centralized resource to identify existing preclinical models that can support their research efforts.
By increasing awareness of available preclinical models, the Rare Melanoma Virtual Model Catalogs help to reduce duplicative efforts in generating and validating models, thus accelerating research for these rare melanoma subtypes where developing new models remains challenging. The catalogs feature important information pertaining to each model, including demographics, genomic profile, cytogenetics, growing conditions, and in some cases, histopathological images and features.
MRA launched the Uveal Melanoma Task Force in 2025, an initiative inspired and led by patient advocates with uveal melanoma. The Uveal Melanoma Task Force is dedicated to transforming the research landscape for this rare and aggressive subtype of melanoma by fundraising and mobilizing resources for advancing scientific discovery, broadening access to clinical trials, and developing novel therapeutics. The Task Force also serves as a patient community for those affected by uveal melanoma, leading efforts to create a patient resource page to facilitate patients with informed decision-making at all stages of their disease journey.
MRA launched the Next Steps Grant Program in 2024 to help accelerate research for rare melanoma subtypes like acral, mucosal, and uveal melanoma. Each year the Next Steps Grant Program provides priority funding for research studies based on key focus areas, including the development of rare melanoma preclinical resources and tools, the building of infrastructure to support the collection of rare melanoma molecular and clinical datasets, and the investigation of novel therapeutic approaches for treating rare melanomas.
Since its launch, the Next Steps Grant Program has provided support for rare melanoma research focused on characterizing rare melanoma preclinical models and identifying new therapies for acral and uveal melanoma:
Learn more about the specific research projects supported by the Next Steps Grant Program.
MRA is leading the Rare Melanoma Consortium (RMC), whose mission is to rapidly improve long-term health outcomes for patients with acral, mucosal, and uveal melanoma by establishing a consortium of academic centers committed to collaborative translational research that can be rapidly advanced to the clinical setting. Launched in 2025, the RMC includes five U.S.-based academic centers selected based on expertise in rare melanoma research at both the translational and clinical levels.
Research studies being worked on by the RMC include the testing of repurposed drugs against validated targets in rare melanomas, the identification of new targets across the rare melanoma subtypes using advanced methods, the development and validation of new preclinical models for use in rare melanoma research, and lastly, the development of new drugs, like small molecules and biologics.
MRA supports innovative research on acral, mucosal, and uveal melanoma through its annual Request for Proposals, which funds researchers pursuing high-impact scientific studies, including those focused on understanding the unique genomics and biology of rare melanomas as well as the discovery of new drugs and treatments for these difficult-to-treat melanoma subtypes.
A major focus area of the MRA is supporting research that aims to understand the genomic landscape of rare melanomas, which advances our understanding of how genomic changes in melanoma cells contribute to disease development and progression. Notably, MRA funded a Team Science Award entitled “Using Genomic Technologies to Comprehensively Characterize Acral Melanoma” to Dr. Maryam Asgari and colleagues. This award led to the identification of genes frequently altered in acral melanoma (as well as actionable therapeutic targets) and evidence that acral melanoma, like the other rare melanoma subtypes, are molecularly distinct from cutaneous melanoma. Learn more about Dr. Asgari’s study.
Other focus areas include the identification of new ways to target the mutations driving these rare forms of melanoma. Specifically, MRA has funded a Team Science award entitled “Targeting Oncogenic Gαq in Uveal Melanoma” to Dr. Boris Bastian and colleagues that aims to identify strategies to selectively target the cancer-causing mutations in uveal melanoma, which has remained a challenge in the field.
Collectively, these and other awards illustrate MRA’s long-standing commitment to advance our understanding of how rare melanomas develop, progress, and can be treated effectively.
