Alone we are rare, but together we are SDS Strong!

Shwachman Diamond Syndrome Foundation

About Us

Shwachman Diamond Syndrome Foundation was founded in 1994 by Joan Mowery, a mother of an SDS patient. Shwachman-Diamond Syndrome Foundation is a national, not-for-profit, patient advocacy organization. Our goals are to advocate and fund research towards improved treatment and a cure. We provide educational services and emotional support to SDS families. We sponsor a bi-annual family conference which allows patients and their families the opportunity to hear and speak to members of our Medical/Scientific Medical Board, who are experts in various aspects of SDS. We are also proud sponsors of the Shwachman-Diamond Syndrome International Scientific Congress which brings together physicians and scientists from around the world to share the most recent information on SDS. And we support the North American SDS Patient Registry. We continually strive to raise awareness of SDS in both the medical community and the general population.

Our Mission

  • Advocate for and fund research towards improved treatment and a cure
  • Raise awareness of SDS in the medical community and the general public
  • Provide educational and emotional support to patients and their families
  • Link families through the Internet and family conferences
  • Disseminate current medical information
  • Support an International Scientific Congress and the North American SDS Patient Registry


Global Genes

Genetic Alliance

Shwachman Diamond Syndrome Registry


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