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
Granted awarded for Developing an inducible mouse model for gene replacement therapy in Succinic Semialdehyde Dehydrogenase Deficiency (SSADHD) Drs. Henry…Read More
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.
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.
Date & Location
July 8, 2022
7:30am to 5:30pm
The meeting is free to attend. Please register on Eventbrite using the following link.
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 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.