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 |
|---|---|---|---|
| Shwachman-Diamond Syndrome (SDS) | Shwachman-Diamond Syndrome Alliance | Eszter Hars | June 4, 2025 |
| Adult Dysphagia | National Foundation of Swallowing Disorders | Elizabeth Daly | June 10, 2025 |
| Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP) | Sisters’ Hope Foundation | Erin Sullivan | June 20, 2025 |
| Leukoencephalopathy and Brain Stem Involvement and Lactate Elevation (LBSL) | Cure LBSL | Cure LBSL | August 1, 2025 |
| Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke-Like Episodes Syndrome (MELAS) | MitoAction | Kira Mann kira@mitoaction.org | February 10, 2026 |
Questions?
To contact FDA’s CDER Patient-Focused Drug Development Program Staff, please email patientfocused@fda.hhs.gov.
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