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 |
|---|---|---|---|
|
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 |
|
Idiopathic Hypersomnia (IH) |
Sleep Consortium |
Lindsay Jesteadt and Claire Wylds-Wright |
April 11, 2024 |
|
Rare, Autoimmune Peripheral Neuropathies: Guillain-Barre Syndrome (GBS), Multifocal Motor Neuropathy (MMN), and Anti-myeline-associated glycoprotein (Anti-MAG) neuropathy |
GBS|CIDP Foundation International |
Chelsey Fix |
May 16, 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 |
| Long QT Syndrome (LQTS) and Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) | SADS Foundation |
Genevie Echols |
June 11, 2024 |
| Classic Congenital Adrenal Hyperplasia (CAH) | CARES Foundation |
Dina Matos |
October 1, 2024 |
| Lupus Nephritis (LN) | National Kidney Foundation |
David Feldman |
October 11, 2024 |
Questions?
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