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 will meet about once per quarter, virtually via Google Meet or zoom. The first, kick-off meeting is planned for mid-November, 2020. More specifically, Saturday, 11/14/2020 at 5 PM Eastern Time, so that participants from all over the world can join. 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.

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Shwachman-Diamond Syndrome Alliance

To advance treatments and finding a cure for Shwachman-Diamond Syndrome.

Contact us:


Phone: +1-617-329-1838

Mail: PO Box 2441
          Woburn, MA 01888

Shwachman-Diamond Syndrome Alliance is a US based not-for-profit 501(3)c corporation, serving the global SDS community.

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