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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

Alstrom Syndrome

Alstrom International

Robin Marshall

robin.marshall@alstrom.org

September 22, 2022

Autoimmune Hepatitis

Autoimmune Hepatitis Association

Erin Anderson

eanderson@aihep.org

January 27, 2023

Cardiovascular Sequelae

Children’s Cancer Cause

Julie Taylor

jtaylor@childrenscause.org

September 15, 2022

Cerebral Creatine Deficiency Syndromes

Association for Creatine Deficiencies 

Celeste Graham

celeste@creatineinfo.org

January 24, 2023

Fabry Disease

National Kidney Foundation and Fabry Support & Information Group

David Feldman

david.feldman@kidney.org

September 19, 2022

Galactosemia

National Organization for Rare Disorders (NORD)

Carrie Lucas

clucas@rarediseases.org

September 1, 2022

GM1 Gangliosidosis

Cure GM1 Foundation

Christine Waggoner

info@curegm1.org

October 14, 2022

Hypophosphatasia

Soft Bones, Inc., The US Hypophosphatasia Foundation

Denise Goodbar

denise@softbones.org

November 15, 2022

Kennedy’s Disease

Kennedy’s Disease Association

Terry Thompson

tthompson@kennedysdisease.org

November 9, 2022

Limb-Girdle Muscular Dystrophy

The Speak Foundation

Kathryn Bryant Knudson

kathryn@thespeakfoundation.com

September 23, 2022

Metachromatic Leukodystrophy

The Calliope Joy Foundation

Melanie Rumbel

melanie@curemld.com

October 21, 2022

Pemphigus and Pemphigoid

International Pemphigus and Pemphigoid Foundation

Marc Yale

marc@pemphigus.org

TBD

Phelan-McDermid Syndrome

CureSHANK

Geraldine Bliss

geraldineybliss@gmail.com

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

Gordon Lavigne

gordon.lavigne@sczaction.org

November 2, 2022

 

Wiskott-Aldrich Syndrome

Wiskott-Aldrich Foundation

Sumathi Iyengar

Sumathi.iyengar@wiskott.org

February 3, 2023

Questions?

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