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?
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