Patient-Focused Drug Development (PFDD) meetings are one of the most powerful advocacy tools available to rare disease communities—but most patients have never heard of them. In this episode of Energy in Action, host Marcy Young sits down with industry expert Marina Kolocha to unpack what PFDD meetings are, why they matter, and how they can help drive real progress in mitochondrial disease research and treatment.
Marina shares insights from her experience moderating over 40 PFDD meetings and breaks down the goals, structure, and long-term impact of these events. Together, they discuss the first-ever PFDD meeting focused on MILAS, scheduled for February 10, 2026, and how patients and caregivers can participate. From voicing daily challenges to shaping future drug development, this conversation offers a rare behind-the-scenes look at a process designed to amplify patient stories at the highest level.
Resources and Ways to Connect
Learn More About MitoAction
Visit MitoAction’s Website – https://www.mitoaction.org
Follow on Facebook – https://www.facebook.com/mitoaction
Follow on X (Twitter) – https://twitter.com/mitoaction
Follow on Instagram – https://www.instagram.com/mitoaction
Connect on LinkedIn – https://www.linkedin.com/company/mitoaction
ENERGY IN ACTION - EPISODE 114 The Life and Legacy of Liel Tamar Fenton joins me to share the story of her daughter, Liel....
Learn about service dogs with Can Do Canines and hear about their upcoming event, The Fetching Ball.
ENERGY IN ACTION - EPISODE 112 CeGaT Genetic Opportunities Eric Miller and Anil Bhardwaj join me from CeGaT, a biotechnology company and world-leader in...