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.

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

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