Shwachman-Diamond Syndrome Foundation (SDSF)

About:
Shwachman Diamond Syndrome Foundation was founded in 1994 by Joan Mowery, a mother of a SDS patient. Shwachman-Diamond Syndrome Foundation is a national, not for profit, patient advocacy organization. Their goals are to advocate and fund research towards improved treatment and a cure. They provide educational services and emotional support to SDS families. They sponsor a bi-annual family conference which allows patients and their families the opportunity to hear and speak to members of their Medical/Scientific Medical Board, who are experts in various aspects of SDS.

They are also proud sponsors of the Shwachman-Diamond Syndrome International Scientific Congress which bring together physicians and scientists from around the world to share the most recent information on SDS. And they support the North American SDS Patient Registry. They continually strive to raise awareness of SDS in both the medical community and general population.

Mission:
• Advocate for and find research towards improved treatment and a cure
• Raise awareness of SDS in the medical community and 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