Ryan Fischer Bio

Ryan Fischer serves as Chief Advocacy Officer for Parent Project Muscular Dystrophy (PPMD) and has been with the organization for 17 years. PPMD is the leading organization in the fight to end Duchenne Muscular Dystrophy. Within PPMD, Ryan oversees all programming under advocacy, care, research, and co-leads the strategic development of the largest patient reported registry in Duchenne developed by PPMD, The Duchenne Registry.

 Ryan leads all patient-focused drug development initiatives under PPMD, including patient-preference research. PPMD was one of the early pioneers of investing in patient preference research for rare disorders, and advocating for advancing the science of patient input. In 2012, Ryan was a member of the core team led by Dr. John Bridges (JHSPH) who developed and produced the first-ever patient preference study on caregiver benefit-risk preferences and priorities for emerging treatments in Duchenne. Since then, Ryan has led the development of 5 additional studies collaborating with Dr. Bridges as well as Dr. Holly Peay (RTI International), to date resulting in 15 publications.  

In 2014, Ryan led the Community Advisory Board charged with guiding the development of the first-of-its-kind patient initiated Draft Guidance on Duchenne Muscular Dystrophy submitted to the FDA. This landmark document informed the development of the FDA’s guidance on Duchenne Muscular Dystrophy, finalized in 2018. In 2022, PPMD led an update to the Community-led Guidance which was submitted to FDA in October of 2022.

Ryan believes the patient voice is the most powerful tool in the rare disease arsenal and advocates for patient and caregiver engagement within all aspects of drug development as part of PPMD’s mission.