Adult SDS Patient Council 

Calling all adult SDS patients - anywhere in the world - to join us to capture your voices, experiences, and needs; to improve medical care and access for adults, and to inform therapy development priorities. If you would like to join or have any questions or suggestions, please message us on Facebook or email us at

The council meets once per month, virtually via Google Meet or zoom. The first meeting took place in November 2020, and was a huge success. The current schedule is set for every second Saturday of the month, 5 PM EST (New York Time) so that participants from all over the world can join. However, please reach out if this time doesn't work for you. Please email us at if you need the meeting link.

We are excited to announce that Jacquelyn Kaufmann Poarch has agreed to chair the Adult SDS Patient Council. Please read about her background on our Meet-The-Team page.