CHICAGO, Oct. 31, 2024 (GLOBE NEWSWIRE) -- On October 28, 2024, the Foundation for Sarcoidosis Research (FSR) hosted a groundbreaking Externally Led Patient-Focused Drug Development (EL-PFDD) meeting on sarcoidosis with the U.S.
Food and Drug Administration (FDA). This virtual event attracted nearly 350 sarcoidosis patients, caregivers, healthcare providers, industry partners, and advocates, coming together to address the critical unmet needs and challenges faced by those living with sarcoidosis. Hosted by Mary McGowan, FSR Chief Executive Officer, and moderated by John Carlin, FSR Sarc Fighter Podcast host, this interactive EL-PFDD meeting provided a platform for patients to share firsthand experiences about living with sarcoidosis, the urgent need for new sarcoidosis-specific therapies, and the symptoms and challenges they would like future therapies to prioritize.
Participants engaged through sharing patient and caregiver stories, participating in topic-specific panels, live polls, call-in segments, and written submissions, making their voices heard on key issues such as symptom management, serious side-effects of some current therapies, impact on daily quality of life, and specific treatment needs and preferences. Dr. Lisa Maier, Professor and Chief of the Division of Environmental and Occupational Health Sciences at National Jewish Health, a member of FSR’s Scientific Advisory Board, and Founding Member of the FSR Global Sarcoidosis Clinic Alliance, provided an overvie.