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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
Wilson Disease (WD)Wilson Disease Association

Rhonda Rowland

rhonda.rowland@wilsonsdisease.org

January 29, 2026
Progressive Supranuclear Palsy (PSP)CurePSP

Jennifer Brummet

Brummet@curepsp.org

February 6, 2026
Mitochondrial Encephalomyopathy Lactic Acidosis and Stroke-Like Episodes Syndrome (MELAS)MitoActionKira Mann
kira@mitoaction.org
February 10, 2026
Diabetic Retinal Disease (DRD)Mary Tyler Moore Vision Initiative

Latrice Faulkner and Jocelyne Clancy

MTMVisionDRD-PFDDinfo@umich.edu

February 12, 2026
Infertility and Advancing Therapeutic Solutions for In Vitro Fertilization (IVF)Alliance for Fertility Preservation

Joyce Reinecke

jreinecke@a4fp.org

March 26, 2026
Central Nervous System Disseminated Coccidiomycosis (Meningitis)MYCARE Foundation

Rob Purdie

rpurdie@fightfungus.org

April 14, 2026
Genetic CardiomyopathiesHypertrophic Cardiomyopathy Association

Hypertrophic Cardiomyopathy Association

support@4hcm.org

April 23, 2026
Diamond-Blackfan Anemia Syndrome (DBAS)The Styrke Foundation for Rare Disease and Treatment

Anne Yang

ayang@styrke.org

May 1, 2026
Maternal Alloimmunization and Hemolytic Disease of the Fetus and Newborn (HDFN)Maternal Alloimmunization Foundation

Stephanie McCary

stephaniemccary@alloimmunization.org

July 20, 2026

Questions?

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