- Katie's Journey - Katie has Shwachman-Diamond Syndrome and needs a bone barrow transplant. Find disease information and links to support organizations.
- NORD: Shwachman Syndrome - Offers a general discussion, the synonyms and further resources.
- Shwachman Syndrome - A mothers story to diagnose this disorder before a team of doctors could.
- Shwachman-Diamond America - Profiles SDA, a nonprofit that educates doctors and families about shwachman-diamond syndrome and also supports research.
- Shwachman-Diamond Syndrome Family/Friends - An email list for families, friends, parents and individuals affected by Shwachman-Diamond Syndrome.
- 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.
- The CaF Directory - A definition of Shwachman syndrome, its inheritance pattern, pre-natal diagnosing and a support group in the United Kingdom.