Founded in 1994 by Joan Mowery, the mother of an SDS patient, Shwachman-Diamond Syndrome Foundation is an international, nonprofit, patient advocacy organization. Our goals are to advocate and support research towards a cure and treatments, to improve medical management of symptoms, as well as to link families for emotional support and supply them with the most current medical information available.

This information is provided with the expertise and cooperation of the Shwachman-Diamond Syndrome Foundation’s professional medical advisory board.

1 thought on “Shwachman-Diamond Syndrome Foundation”

  1. David L. Amone says:

    Hi, thanks for the program. My name is David from Uganda and my kid has been experiencing seizures since 2010 and is now 10. Neurologists have tried with medications and he is now on Carbarmazephine 600mg/day and epillium sodium volproate 600mg/day. He stopped salivating but continues to experience seizures only whenever he falls asleep.
    Please advise, if you can.
    Many thanks.

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