Support
The MRF represents and supports patients fighting the deadliest form of skin cancer, three rare subtypes of melanoma, as well as those who care for them.
Mucosal l Established focus group to guide future of the program l Created list of mucosal melanoma treatment facilities l Produced first mucosal melanoma educational video l Expanded website content and developed “questions to ask your doctor” checklist l Provided over 300 hours of dedicated support to mucosal melanoma patients
Caregivers l Launched HealthUnlocked online support community for melanoma caregivers l Partnered with Thomas Jefferson University to develop online support group for ocular melanoma caregivers l Hosted 36 melanoma caregivers at the 2017 Advocacy Summit & Hill Day Ocular l Launched project to develop first of its kind patient-reported ocular melanoma registry – Engage patients in research – Improve patient outcomes – Gather comprehensive rare disease data – Accelerate development of more effective OM treatments l Hosted 6th Annual Eyes on a Cure: Patient and Caregiver Symposium l Increased membership of the CURE OM Patient and Family Steering Committee to 9 members
Pediatric l Created Pediatric Scientific Steering Committee
l Hosted Pediatric Melanoma Summit l United world class researchers to guide the direction of future initiatives and programming l Provided over 600 hours of specialized education and support to pediatric melanoma families
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