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 |
|---|---|---|---|
|
Alstrom Syndrome |
Alstrom International |
Robin Marshall |
September 22, 2022 |
|
Autoimmune Hepatitis |
Autoimmune Hepatitis Association |
Erin Anderson |
January 27, 2023 |
|
Cardiovascular Sequelae |
Children’s Cancer Cause |
Julie Taylor |
September 15, 2022 |
|
Cerebral Creatine Deficiency Syndromes |
Association for Creatine Deficiencies |
Celeste Graham |
January 24, 2023 |
|
Fabry Disease |
National Kidney Foundation and Fabry Support & Information Group |
David Feldman |
September 19, 2022 |
|
Galactosemia |
National Organization for Rare Disorders (NORD) |
Carrie Lucas |
September 1, 2022 |
|
GM1 Gangliosidosis |
Cure GM1 Foundation |
Christine Waggoner |
October 14, 2022 |
|
Hypophosphatasia |
Soft Bones, Inc., The US Hypophosphatasia Foundation |
Denise Goodbar |
November 15, 2022 |
|
Kennedy’s Disease |
Kennedy’s Disease Association |
Terry Thompson |
November 9, 2022 |
|
Limb-Girdle Muscular Dystrophy |
The Speak Foundation |
Kathryn Bryant Knudson |
September 23, 2022 |
|
Metachromatic Leukodystrophy |
The Calliope Joy Foundation |
Melanie Rumbel |
October 21, 2022 |
|
Pemphigus and Pemphigoid |
International Pemphigus and Pemphigoid Foundation |
Marc Yale |
TBD |
|
Phelan-McDermid Syndrome |
CureSHANK |
Geraldine Bliss |
November 8, 2022 |
|
Schizophrenia |
The American Foundation for Suicide Prevention, Mental Health America, the National Alliance on Mental Illness (NAMI), the National Council for Mental Wellbeing, Schizophrenia and Psychosis Action Alliance (S&PAA) |
Gordon Lavigne |
November 2, 2022
|
|
Wiskott-Aldrich Syndrome |
Wiskott-Aldrich Foundation |
Sumathi Iyengar |
February 3, 2023 |
Questions?
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