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Profiles SDA, a nonprofit that educates doctors and families about shwachman-diamond syndrome and also supports research. http://shwachmandiamondamerica.org
Shwachman-Diamond Syndrome International
Support organization helping the victims of this disease. Provides a network for families to receive information, advocacy, and emotional support, and keep abreast of the most current medical information available. http://www.shwachman-diamond.org/