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Logos for SDS Alliance, SDS-GPS, Across Healthcare, Matrix, Critical Path Institute, and RDCA-DAP, alongside an illustration of researchers reviewing multiple datasets on a shared data analysis interface.

Your Data, Reaching Further SDS-GPS Joins RDCA-DAP by C-Path

Your SDS-GPS data just gained international reach. Learn how a new integration with RDCA-DAP is helping turn patient experience into real progress toward SDS treatments, and what it means for your privacy.

SDS Alliance News

Jul 23

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

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

Your Data, Reaching Further SDS-GPS Joins RDCA-DAP by C-Path

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

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

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