| 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. |