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We are dedicated to financially supporting and advocating for research towards curative therapy for all patients.

Our worldwide mission revolves around educating and empowering individuals and their families affected by Shwachman-Diamond Syndrome. We are devoted advocates for the community, working tirelessly to raise awareness and support. Furthermore, we participate in an online platform where patients can share experiences and connect with other families.

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Family Support

Whether you are going through the SDS diagnosis, are newly diagnosed or have been dealing with SDS for a while, join our SDSF family.

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Need for Research

With the support of our SDS families and generous supporters, we have funded many important research projects.

Support Research

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Patient Registry

The more data that is available to doctors and researchers, the faster they can help with diagnosis, treatments, and hopefully a cure.

Join a Registry

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Patient Care

With a diagnosis of SDS, there are several important documents and records that should be organized to keep track of a patient’s care.

View Information

SDSF is proud to be funding the following new and exciting research projects that will benefit all SDS patients.

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leukemia cell

Minimally invasive risk assessment for people with sds

This project seeks to enhance leukemia risk monitoring for SDS patients, who are prone to blood cancers like MDS and AML. Survival rates are low post-diagnosis. Current detection relies on painful and stressful bone marrow biopsies. Our researchers are exploring using blood genetic mutation testing for less invasive and targeted screening.

ribosome cell

Restoring ribosome function

We're urgently developing small molecules to target eIF6 protein in SDS, aiming to restore ribosome function and improve patients' lives. Early findings suggest this approach could alleviate symptoms and reduce the risk of blood cancers. With your support, we're hopeful about significant progress within 5 to 10 years.

Making an Impact

"SDSF has helped us get in contact with good doctors, given us a community where we feel like we belong. They are actively working to help researchers find treatment options for us, which helps us feel better about the future".

Adult Patient

"SDSF provides me with peace of mind knowing they have my back with information and support".

Parent of Patient

"It's a foundation that helps patients and families learn and get help, it also helps families get in contact with other families and doctors. It finances research to help families".

Parent of Patient

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  • Since our founding, we have funded 19 research projects totaling over $1,000,000.
  • Last year alone, we funded $100,000 in research toward curative therapy for SDS patients.
  • In 2022, we responded to over 400 email and telephone inquiries from families, physicians and other SDS groups.
  • Last year, we mailed and distributed over 600 “SDS and Me” books and SDS glossaries.
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  • We emotionally support families in 48 countries, and provide educational materials.
  • We produce online educational podcasts available worldwide and in multiple languages.
  • We provide gifts and support to patients and families going through bone marrow transplant.
  • We work in collaboration with and support the SDS Registry.
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  • We financially contribute to the SDS International Congress It is the only event were researchers and physicians across the globe can meet and share their work.
  • We represent our families at the American Society of Hematology Annual Meeting, talking to and giving information about SDS to physicians and researchers around the world.

We all want a cure for SDS patients. That can only happen with more research. Make a financial gift and become part of the solution.

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