Join Our Shwachman-Diamond Syndrome Family (SDS)
At the Shwachman-Diamond Syndrome Foundation (SDSF), our mission is simple but powerful: To support every patient and family living with Shwachman-Diamond Syndrome and to help create a happy, healthy future.
We’re Here for You
From the moment of diagnosis and every step along the way, SDSF is here to support you. Whether you’re looking for answers, guidance, or community — you’ve found the right place.
What We Offer
Patient & Family Support
We connect families with trusted medical experts and specialists who understand Shwachman-Diamond Syndrome (SDS).
Education & Resources
Access easy-to-understand videos, written materials, and updates to help you learn about the condition and how to manage it.
Conferences & Community
Attend family conferences where you can meet others affected by SDS and hear directly from world-renowned physicians and researchers.
Research for a Cure
Your involvement helps us fund critical research aimed at better treatments, and ultimately a cure, for Shwachman-Diamond Syndrome (SDS).
You’re Not Alone
Joining our Shwachman-Diamond Sydrome Family means becoming part of a compassionate community dedicated to care, connection, and hope. Together, we are stronger.
Join our SDSF Family
Whether you are going through the SDS diagnosis, are newly diagnosed or have been dealing with SDS for a while, JOIN our SDSF family! Upon joining, we will add you to the SDSF e-newsletter list so you can stay informed.
**If you have already joined our SDS family and your contact information (address, phone number, email address, etc.) has changed please click the button below.
Registries To Join
Shwachman-Diamond Syndrome encourages every patient with SDS to participate in any or all of the following registries. The more data that is available to doctors and researchers, the faster they can help with diagnosis, treatments, and hopefully a cure!
SDS Registry
Shwachman-Diamond Syndrome encourages every patient with SDS to participate in any or all of the following registries. The more data that is available to doctors and researchers, the faster they can help with diagnosis, treatments, and hopefully a cure!
NCI/IBMFS Cohort Study Inherited Bone Marrow Failure Syndrome Study (IBMFS)
The NCI IBMFS Cohort Study consists of affected individuals and their immediate families who have an inherited bone marrow failure syndrome (IBMFS)-either one that has been specifically identified and defined, or bone marrow failure that appears to be inherited but has no clear genetic basis.
The study includes people seen and evaluated at the NIH Clinical Center in Bethesda, MD, and many more who participate remotely. Participants provide information and samples of blood, bone marrow, or other tissues, but the majority are not seen by the team at the NIH.
Severe Chronic Neutropenia
International Registry
The Severe Chronic Neutropenia International Registry (SCNIR or Registry) is a global organization dedicated to finding the causes, consequences and best treatments for severe chronic neutropenia (SCN). The SCNIR opened in 1994 after researchers discovered that the hematopoietic growth factor called granulocyte colony stimulating factor (G-CSF) is an effective treatment for SCN.
Shwachman-Diamond
Syndrome Patients
Pictured below are a few amazing SDS patients. These patients face the struggles of Shwachman-Diamond Syndrome on a daily basis. To help find a cure for these patients, please consider donating to the Shwachman-Diamond Syndrome Foundation.
If you would like to add a new patient picture or edit an existing patient picture, please email a high-quality photo to info@shwachman-diamond.org with the SDS patient’s name and age.
