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Hands holding a spiral-bound copy of the Shwachman-Diamond Syndrome Voice of the Patient Report, from the Externally-Led Patient Focused Drug Development Meeting held in Cincinnati, OH on June 4th, 2025.

One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already at Work

The Shwachman-Diamond Syndrome Voice of the Patient report is now published and submitted to the FDA. Learn what the EL-PFDD meeting captured, how the report is used, and what comes next.

SDS Spotlight

Jun 4

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

SDS-GPS survey domains including Diagnosis and Genetics, Symptoms Head to Toe, Bone Marrow Impact, Everyday Quality of Life using PROMIS surveys (new), Perspectives on Clinical Trials, and Research Interest in Registries and Biobank — Shwachman-Diamond Syndrome Alliance SDS Alliance

Living with Shwachman-Diamond Syndrome: What Lab Tests Can't Tell Us

Your (or your child's) ANC came back stable. But were they really feeling okay? Discover how SDS Alliance is adding Quality of Life (PROMIS) surveys to SDS-GPS — measuring what lab tests can't capture, and building the data we need for clinical trials by 2030.

SDS Spotlight

Apr 2

All Blogs & News

One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already at Work

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

Living with Shwachman-Diamond Syndrome: What Lab Tests Can't Tell Us

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