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.
In May 2021, the Adult SDS Patient Council launched a new program partnering with Potsie Packs to support adult SDS community members who are going through a tough time in their SDS journey!
Potsie Packs specializes in care packages for young adults: Oftentimes, teens and young adults fighting chronic illnesses and cancer find themselves caught between being both too young and too old to receive care packages catered to them. Potsie Packs aims to provide unique gifts and helpful resources to this age group through our care package program. However, most importantly, we aim to make people smile as they go through some of the toughest days of their lives.
To request a Potsie Pack, please fill out this form and mention that it is through the SDS Alliance for a Shwachman-Diamond Patient.