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Upcoming SDS Registry Events

SDS Registry Family Day 2024

Please join us virtually on September 15, 2024 from 1:00-5:00 PM EST for a day of education and connection including presentations from experts in SDS, updates from the Registry, panel discussions with Q&A, and more! 

Information regarding registration to come.

SDS Congress 2025

The 11th International SDS Congress will be held June 5-8, 2025, in Cincinnati, Ohio. SDS experts from around the world will present their newest research to both the scientific community and families.

Click here to learn more!

SHWACHMAN-DIAMOND SYNDROME REGISTRY

Accelerating research to find a cure for SDS

OUR MISSION

The Shwachman-Diamond Syndrome (SDS) Registry is committed to accelerating the pace of discovery for treatments and therapies of SDS.  The Registry provides access to clinical expertise as well as cutting-edge research.

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SAMPLES & RECORDS

Every patient's experiences and samples hold vital clues to advance our understanding of SDS.  The SDS Registry enables patients to share their medical information and samples with researchers working to cure SDS.

QUESTIONS?

Physicians or patients with questions about SDS are welcome to contact our medical team.

OUR CLINICAL CENTERS
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JOIN

Contact our team to learn more about participating in the SDS Registry.

Learn About the SDS Registry

Join The Registry

Join the Registry

If you are interested in enrolling yourself and/or your child in the SDSR, please fill out this form so we can contact you or click here to contact us directly.

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Thanks for submitting!

AREAS OF FOCUS
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Accelerate
Research

Harnessing science and clinical research to improve diagnosis and treatment of SDS.

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Empower Patients & Families 

Providing education and resources to SDS patients and families through access to clinical expertise and leading edge research. 

The Registry invites the SDS community to join the fight to beat SDS.  

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Engage
Physicians & Researchers

Sharing medical expertise  to improve clinical care. 

Promoting collaboration to advance SDS research.

GIVE TODAY TO ACCELERATE SDS RESEARCH
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