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

GC Biopharma builds mRNA manufacturing plant in South Korea

January 12, 2024

The plant features a single-use manufacturing unit, reducing the risk of cross-contamination and facilitating the production of a number of…

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SSADH Presented at AES

January 5, 2024

The American Epilepsy Society (AES) annual meeting for 2023 was held in Orlando, Florida from December 1-5, 2023.  The event…

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Neurobiology of SSADH Deficiency

January 5, 2024

Over the past three and half years, Wardiya Afshar-Saber, Ph.D. a research fellow in Neurology at Boston Children’s Hospital in…

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SSADH Deficiency becomes the topic for the Boston Children’s Hospital Metabolism Grand Rounds.

November 29, 2023

On Tuesday November 28th Dr. Phillip L. Pearl gave a talk, titled: Results of the SSADH Deficiency Natural History Study. This talk included…

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Over a 100 patients, caregivers and doctors gathered from across the US, and from as far away as Asia, Europe and Greece to participate in the Externally Led - Patient Focused Drug Development (EL-PFDD) meeting. Additionally, we had participants join us virtually who were unable to travel because of the logistical challenges of traveling with their affected children.

The PFDD initiative was developed for the FDA to systematically obtain the patient perspective on specific diseases and their currently available treatments.

At the PFDD meeting the families highlighted the most significant symptoms of SSADH Deficiency and shared stories to reflect the impact that this disorder has on the patient’s daily life while emphasizing  the lack of treatment options.  The finding are summarized in
the Voice of the Patient report. 

 

Video Recording From July 8, 2022 EL-PFDD Meeting

We are happy to provide the videos below of the
SSADH EL-PFDD Meeting, for those who were unable
to attend in person.

SSADH Association Welcome and Morning Session 1
EL-PFDD Meeting, Video 1 of 4.

Morning Session 2

EL-PFDD Meeting, Video 2 of 4.

Afternoon Session 1

EL-PFDD Meeting, Video 3 of 4.

Afternoon Session 2

EL-PFDD Meeting, Video 4 of 4.