Patient Insights Board Member, Patient Advocate
Medidata
Mindy Cameron has been embedded in the patient advocacy community for over 16 years as a parent of a young adult with Duchenne muscular dystrophy and as a professional advocating for those affected by rare disease. She has personally experienced the ups and downs of a rare disease diagnosis and has also picked up an abundance of knowledge from mentors and others along the way.
As a professional working in rare disease advocacy, Mindy has led major fundraising and disease awareness campaigns, educated rare disease communities about drug development and the importance of their participation, and helped government officials and commercial partners better understand the needs of those living with or affected by a rare disorder.
Recently, as Advocacy Director for the Little Hercules Foundation, Mindy worked on policy issues around access and reimbursement at both the state and federal level and was part of a small team that developed the Duchenne Family Assistance Program (DFAP). The DFAP is a ground-breaking initiative that helps individuals and families navigate health insurance and Medicaid issues and assists them in finding and utilizing vital community and state resources.
Mindy serves on the Board of Directors of two non-profit foundations serving the rare community: The Muscular Dystrophy Family Foundation and Remember the Girls, an organization that supports carriers of X-linked genetic disorders. She also serves on the Disability Advisory Board for the city of Carmel, Indiana.
Currently, Mindy is a consultant working with patients, industry, and others in the rare disease space to ensure that the patient and caregiver perspective is included in all aspects of drug development, government decision making, and issues aimed at improving the quality of life for those affected by rare disease.
