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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 Condition

Organization Submitting LOI

Organization Contact

Anticipated Meeting Date

Low-Grade Serous Ovarian Cancer (LGSOC) STAAR Ovarian Cancer Foundation

Nicole Andrews


October 13, 2023


STXBP1 Foundation

Charlene Son Rigby


October 20, 2023

Classical Homocystinuria (HCU)

HCU Network America

Danae Bartke


October 27, 2023

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility spectrum disorders (HSD)

The Ehlers-Danlos Society

Oumaima Nehaili


October 31, 2023

Polycystic Ovary Syndrome (PCOS) PCOS Challenge: The National Polycystic Ovary Syndrome Association

Sasha Ottey


November 3, 2023

Kidney Xenotransplantation

National Kidney Foundation

Heather Murphy


November 9, 2023

Immune Thrombotic Thrombocytopenic Purpura (iTTP)

The Ree Wynn Foundation

James Wynn


January 26, 2024

GM2 gangliosidoses (Tay-Sachs and Sandhoff diseases)

National Tay-Sachs & Allied Diseases Association (NTSAD)

Diana Jussila


February 15, 2024

Pediatric Low-Grade Glioma (pLGG) Pediatric Brain Tumor Foundation

Ian Joyce


February 23, 2024
Dry Age-Related Macular Degeneration (Dry AMD) Foundation Fighting Blindness

Todd Durham


March 1, 2024


HypoPARAthyroidism Association

Michele Rayes


March 5, 2024

Peroxisomal Disorders

The Global Foundation for Peroxisomal Disorders

Melissa Bryce


May 28, 2024

Adult Dermatomyositis (DM) Myositis Support and Understanding

Lynn Wilson


June 7, 2024


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