Virtual and local patient & family support options

NEW: Online support group for SDS patients and their close family, with a little bit science update sprinkled in.
Click here for more info and to register.

There is also a very active global Facebook group specifically for patients and their direct caregivers for the global community, and not affiliated with any particular support organization.

Are you looking for local support and connections with patients near you? Reach out to your local SDS patient support group. You can find your nearest organization 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.

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.

Email

Phone

N/A

Facebook

Italy

Email

Phone

+49 6893168

Facebook

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.

Email

use website

Phone

N/A

Facebook

Shwachman-Diamond Syndrome Alliance

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

Contact us:

Email: connect@SDSAlliance.org

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.

© 2020 Shwachman-Diamond Syndrome Alliance |  Terms of Use  |   Privacy Policy