The Shwachman Diamond Syndrome Foundation is affiliated with the following organizations.

Global Genes

Global Genes is a non-profit 501(c)(3) corporation advocating for rare disease globally. The Global Genes RARE Foundation Alliance is a coalition of more than 750 rare disease organizations and members that believe in the power of collective impact and understand that together, we are more powerful. 


NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Genetic Alliance

Genetic Alliance, a nonprofit founded in 1986, is a leader in deploying high-tech and high-touch programs for individuals, families, and communities to transform health systems by being responsive to the real needs of people in their quest for health.


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