Muscular Dystrophy Family Foundation - Board Member
Remember the Girls - Board Member
Little Hercules Foundation - Part-time consultant
Mindy Cameron has participated in the ECRI Horizons Scanning Project as a reviewer of potential therapies for neuromuscular conditions, and has served multiple times as a consumer reviewer for the Duchenne Muscular Dystrophy Research Program at the US Department of Defense. She has been a part of various Patient-Focused Drug Development Initiative activities at the Food and Drug Administration, as well as meetings of the Institute for Clinical and Economic Review and the Critical Path Institute.
She has led an Institutional Review Board-supported Health Economics Outcome Research study on access and reimbursement issues, which recruited healthcare providers, patients, and families affected by Duchenne muscular dystrophy. As a patient community liaison for the Powell Center for Rare Disease Research and Therapy at the University of Florida, she translated scientific research information and study results into language better understood by patients, families, and care providers and helped disseminate that information via press releases, social media, and speaking engagements.
Cameron has completed a certification course from the Duchenne Patient Academy, a global initiative that serves as a model for other rare disease groups seeking international collaboration in research, patient care, family support, and regulatory and policy issues. She has been embedded as a patient advocate in the rare disease space for nearly 20 years.