Upcoming EL-PFDD Meetings

Upcoming EL-PFDD Meetings To promote transparency and communication, FDA is sharing a list of disease areas where a letter of intent (LOI) has been submitted and ongoing plans exist for a future Externally-Led PFDD meeting. While multiple organizations may be working together, the organizations listed below are the primary points of contact for any questions regarding their EL-PFDD meeting. FDA does not conduct Externally-Led PFDD meetings and a listing on this webpage does not reflect endorsement. | Disease or Condition | Organization Submitting LOI | Organization Contact | Anticipated Meeting Date | |---|---|---|---| | Central Nervous System Disseminated Coccidiomycosis (Cocci Meningitis) | MYCARE Foundation | Rob Purdie | April 14, 2026 | | Genetic Cardiomyopathies | Hypertrophic Cardiomyopathy Association | Hypertrophic Cardiomyopathy Association | April 23, 2026 | | Diamond-Blackfan Anemia Syndrome (DBAS) | The Styrke Foundation for Rare Disease and Treatment | Anne Yang | May 1, 2026 | | Down Syndrome-Associated Alzheimer’s Disease (DS-AD) | National Down Syndrome Society | National Down Syndrome Society | June 2, 2026 | | Maternal Alloimmunization and Hemolytic Disease of the Fetus and Newborn (HDFN) | Maternal Alloimmunization Foundation | Stephanie McCary | July 20, 2026 | | Lipodystrophy | Lipodystrophy United | Kate Stratton | September 11, 2026 | | Spinal Cord Injury (SCI) | Spinal Cord Injury Perspectives Initiative | Gabriela Ocampo | September 29, 2026 | | Fanconi Anemia (FA) | Fanconi Cancer Foundation | Andrea Ronan | October 3, 2026 | | SCN2A | FamilieSCN2A Foundation | SCN2A Foundation | October 23, 2026 | | APOL1 Kidney Disease | National Kidney Foundation and NephCure | David Feldman | November 6, 2026 | | Giant Axonal Neuropathy (GAN) | Hannah's Hope Fund | hhf4gan@gmail.com | November 6, 2026 | | Mucormycosis | MYCARE Foundation | Rob Purdie | November 10, 2026 | | Pitt Hopkins Syndrome | Pitt Hopkins Research Foundation | Pitt Hopkins Research Foundation | November 13, 2026 | | Sickle Cell Disease (SCD) | Sickle Cell Disease Association of America Inc. | Sickle Cell Disease Association of America Inc. | December 1, 2026 | Questions? To contact FDA’s CDER Patient-Focused Drug Development Program Staff, please email patientfocused@fda.hhs.gov. To get updates about CDER’s Patient-Focused Drug Development programs, subscribe to our free email subscription service at the bottom of the page.