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 |
|---|---|---|---|
|
Arrhythmogenic Right Ventricular Cardiomyopathy/Dysplasia (ARVC/D) |
SADS Foundation |
Alice Lara |
June 20, 2023 |
| Prader-Willi Syndrome (PWS) | PWSA | USA |
Dorothea Lantz |
June 22, 2023 |
| Autosomal Recessive Polycystic Kidney Disease (ARPKD) | PKD Foundation |
Elise Hoover |
August 29, 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) | The National Polycystic Ovary Syndrome Association (PCOS Challenge) |
Sasha Ottey |
November 3, 2023 |
|
Kidney Xenotransplantation |
National Kidney Foundation |
Heather Murphy |
November 9, 2023 |
Questions?
To contact FDA’s CDER Patient-Focused Drug Development Program Staff, please email patientfocused@fda.hhs.gov.
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