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 |
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 |
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 |
Questions?
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