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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 ConditionOrganization Submitting LOIOrganization ContactAnticipated Meeting Date
Shwachman-Diamond Syndrome (SDS)Shwachman-Diamond Syndrome Alliance

Eszter Hars

patientvoice@sdsalliance.org

June 4, 2025
Adult DysphagiaNational Foundation of Swallowing Disorders

Elizabeth Daly

Elizabeth@nfosd.com

June 10, 2025
Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP)Sisters’ Hope Foundation

Erin Sullivan

erin@sistershopefoundation.org

June 20, 2025
Leukoencephalopathy and Brain Stem Involvement and Lactate Elevation (LBSL)Cure LBSL

Cure LBSL

info@curelbsl.org 

August 1, 2025
Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke-Like Episodes Syndrome (MELAS)MitoActionKira Mann
kira@mitoaction.org
February 10, 2026

Questions?

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