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Illustration of corrected DNA symbolizing the edited SBDS gene for SDS with a question mark arrow pointing toward a patient figure, representing the promise and open questions of how to get gene therapy for Shwachman-Diamond Syndrome to clinical trials and into patients

How YOU can help move gene therapy forward for SDS

Gene therapy for SDS is advancing. Learn what's being developed, why base and prime editing matter, and how your perspective can shape what comes next.

SDS Alliance News

Jul 9

Infographic titled 'Your Data is Safe, Your Voice Matters' with the SDS-GPS and SDS Alliance logos. Features an illustration of a person holding a shield with a checkmark next to a locked phone screen. Four bullet points list privacy commitments: Your name stays with us — only de-identified data is shared with researchers, IRB-approved protocol required. No patient list is ever shared — third parties never receive any identifying information, no exception. You stay in control — withdraw anytime, full transparency through informed consent. Data protected like in a bank — highest encryption standards, secure US servers, GDPR compliant, meets FDA requirements.

Your Data is Safe: What Newly Diagnosed SDS Families Need to Know About SDS-GPS

Newly diagnosed with Shwachman-Diamond Syndrome? Learn how SDS-GPS protects your privacy while helping advance research and therapies for SDS.

SDS Alliance News

Apr 28

Nora's SDS Story with a Twist: Our Quest for a Cure

"I needed to push for what I thought my daughter needed. I was her voice." Shares Nora's mom Lisa. Read this US family's story, here. If...

SDS Patient Stories and News

Oct 23, 2021

All Blogs & News

How YOU can help move gene therapy forward for SDS

Your Data is Safe: What Newly Diagnosed SDS Families Need to Know About SDS-GPS

Nora's SDS Story with a Twist: Our Quest for a Cure

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