Virtual and local patient & family support options
We have launched a private Facebook group for SDS families and their close supporters, who are interested in honest, mindful, and proactive discussions about SDS, the latest research, and opportunities to get involved and make a difference, called the ACTION TEAM Facebook group. Please join if you would like to get involved.
Are you looking for local support and connections with patients near you? Reach out to us, and we will help you get connected with other families in your area! You can also find established patient support organizations listed by country (sorted Z > A), in the table below.
Don't see your country represented? Contact us!
We can help you set up a group and even host a simple info page for you.
United States
Phone
+1-888-825-SDSF (7373)
Netherlands
The foundation was established in 1998 to bringing families in their midst with someone with the rare Shwachman Diamond Syndrome; to represent the interests of people with Shwachman Diamond Syndrome and their families; maintaining contacts with international support groups; and collecting and disseminating information and providing information.
Phone
N/A
Germany
Phone
+49 160 944 744 02
Canada
Shwachman-Diamond Canada is a registered Canadian charity (Registered Charity #86880-8197 RR001) dedicated to raising and awarding funds for much needed research, disseminationd information and improving the quality of life for children and adults with SDS and their families.
use website
Phone
N/A