Need for Research

We need your Help NOW
Government funding for research has dwindled. And even more so for diseases involving smaller groups of patients. We, therefore, must rely on the generosity of our families and supporters to continue our pursuit of better treatments and an ultimate cure for SDS.

With the support of our SDS families and generous supporters, Shwachman Diamond Syndrome Foundation has funded many important research projects in the past in the United States and other countries. SDS is a very rare disease, we are grateful to those researchers who are willing to give their time and expertise to help those living with SDS. If you are a researcher interested in submitting a grant request, please email us at

Because of the dedication of doctors and researchers, more than 500 professional research articles have been written and published since 1971. Several of these doctors, researchers, scientists, fellows, medical students from the United States and numerous other countries gather every two years at the Shwachman Diamond Syndrome International Scientific Congress to present, discuss and disseminate the newest research concerning SDS.


Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
NORD 2021 Platinum Member
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