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SHWACHMAN-DIAMOND SYNDROME REGISTRY

Accelerating research to find a cure for SDS

Announcements

Action Requested: Annual SDSR Medical Update Form

We’re updating our records and we need your help! Please complete this 10-minute form to ensure our research reflects your current experience. Check your inbox for the SDSR Annual Medical Care Update Form and complete today. If you didn’t receive the form, please reach out to us at SDSRegistry-dl@childrens.harvard.edu. Thank you for supporting our ongoing research!

Want to learn more about what the SDS Registry has been up to? Click here to learn more about our impact, research, and future projects!

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Thank you to everyone who participated in our survey opportunity! We are grateful for your time and efforts and look forward to sharing the results of this study soon!

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

WHO IS INVOLVED?

440
SDS Registry Participants
128
SDS Registry
Family Members

Contact Us

Please fill out this form or click below so that we can set up a time to discuss the registry with you. We look forward to answering any questions you may have and getting you enrolled!

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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. 

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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. 

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Promoting collaboration to advance SDS research.

OUR CLINICAL CENTERS
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GIVE TODAY TO ACCELERATE SDS RESEARCH
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