2016 Symposium Group photo

Making a Difference

The SSADH community is made up of families, scientists and doctors from around the world working together to make a better life for this very special patient population.

Our Mission

The SSADH Association is a voluntary, not-for-profit, 501(c) (3) organization dedicated to helping children and families affected by an ultra-rare neurometabolic disorder known as Succinic Semialdehyde Dehydrogenase Deficiency or SSADH.

The SSADH Association is committed to those affected with this neurotransmitter disease through education, advocacy and research.

News & Updates

EL-PFDD Meeting

June 6, 2022

The Externally-Led Patient-Focused Drug Development (EL-PFDD) initiative was developed for the Food and Drug Administration (FDA) to systematically obtain the…

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Journal of Child Neurology Special Issue:

January 11, 2022

2020 Conference Proceedings of the International SSADH Deficiency / Conference Organizers: Phillip L. Pearl, MD, Melissa L. DiBacco, MD, Jean-Baptiste…

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NINDS Awards two year grant: ERT for SSADH Deficiency

January 11, 2022

Granted awarded for Developing an inducible mouse model for gene replacement therapy in Succinic Semialdehyde Dehydrogenase Deficiency (SSADHD) Drs. Henry…

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Proceedings Published from Virtual Conference

December 14, 2021

The manuscripts from the 2020 Virtual SSADH Conference are being published on-line through the Journal of Child Neurology.  The majority…

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The Patient-Focused Drug Development (PFDD) initiative was developed for the The Food and Drug Administration (FDA) to systematically obtain the patient perspective on specific diseases and their currently available treatments. PFDD meetings have a format designed to engage patients and elicit their perspectives on two topic areas; 1) the most significant symptoms of their condition and 2) the impact of the condition on daily life and their current approaches to treatment.

The patient perspectives will be used to develop the Voice of the Patient Report.

Attendees
We welcome all patients with SSADHD, along with their families, caregivers, teachers, aids, therapists, researchers, and physicians to engage and give your perspective on daily life with SSADHD. The FDA will be in attendance and this is a great opportunity to inform them about SSADHD.

We are hoping for in-person attendance, but will have a virtual option available. We will also offer respite care and programming for patients and siblings during the meeting (close to the event room) so caregivers will have the opportunity to focus on the meeting.

 

Meeting Details 
Date & Location
July 8, 2022
7:30am to 5:30pm

Registration
The meeting is free to attend. Please register on Eventbrite using the following link.

Hotel Accommodations
The meeting will be at the Bethesda Marriott Downtown.
Please use this link to make a reservation under the block for a discounted rate. Reservations need to be made by June 8, 2022.

Travel Stipends
Travel stipends are available for patients and families. Please use this link to apply.

Goals of PFDD Meeting
The goal of the meeting is to develop validated benefit-risk assessments for drug development using the meeting outcomes.