Register a Patient
This registration form is for the Shwachman Diamond Syndrome Foundation. Upon registering with SDSF, we will provide you with an Informational Packet and a subscription to our SDSF e-newsletter to stay informed.
**If you have already registered an SDS patient with the SDSF and your contact information (address, phone number, email address, etc.) has changed, visit the update your information page.
It is important for all our families to understand the difference and purpose of the Shwachman Diamond Syndrome Foundation (SDSF) and the Shwachman Diamond Syndrome Registry (SDSR).
- The Shwachman Diamond Syndrome Foundation (SDSF) is the family support group that funds research projects with the money raised by our families and friends, organizes Camp Sunshine, and publishes the newsletter. Families can be placed on our mailing list by filling out the online form below or calling 1-888-825-7373.
- The Shwachman-Diamond Syndrome Registry is a research organization that collects and analyzes the medical information of patients with Shwachman-Diamond Syndrome in order to improve diagnosis and treatment of the rare disorder. The Shwachman Diamond Syndrome Registry is centered at the Fred Hutchinson Cancer Research Center in Seattle, Washington and Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio. We strongly recommend that every SDS patient registers with the SDS Registry so more data is available for doctors to research for a cure!To learn more about the SDS Registry, please visit The SDS Registry.
It is important to know that because of privacy laws, the SDSF and the SDS Registry can NOT share information. You must register with both. Also, please remember to notify the SDSF and the SDS Registry with any personal information or medical changes.