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 connect@SDSAlliance.org.
The council meets once per quarter, 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 the second Saturday of the month March, June, September, and December, at 4 PM EST (New York Time) so that participants from all over the world can join. Please reach out if this time doesn't work for you. Please email us at email@example.com if you would like to join and we will send you the meeting link.
We are excited to announce that Jacquelyn Kaufmann Poarch is now chairing the Adult SDS Patient Council. Please read about her background on our Meet-The-Team page.
Mental Health Resources
A great webinar from our friends at the AA-MDS International Foundation
Our Odyssey – An organization for people ages 18-35 impacted by chronic and rare conditions
Peer-to-peer connection with the wider SDS community, not just adults with SDS
Ideas for coping learning, cognitive, and behavioral challenges
https://www.understood.org - A great resource to learn how to deal with executive functioning challenges and other types of learning differences. Useful for both caretakers, teachers, and people experiencing the challenges themselves. Here is an example of search results for executive functioning.
Medication copay assistance programs (US)
CREON On Course support program - offers copay assistance and sometimes provides ADEK vitamins and nutritional supplements. [US only, as far as we can tell]
Zenpep Z-Save Patient support program - - offers copay assistance and sometimes provides ADEK vitamins and nutritional supplements. [US only, as far as we can tell]
Assistance accessing healthcare services (US)
Got Transition – Helps to improve the transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
Healthcare advocacy resources for patients: These are some organizations that specialize in helping patients navigate the US healthcare system to help them get access to insurance, specialists, medications, services, etc. We have no first-hand experience with these organizations, so please use sound judgment as you engage with them.
Care packages (currently ON HOLD)
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.