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All Blogs & News
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.
Project PACER: Building Shwachman-Diamond Syndrome Education Together
Take our 5-minute survey to shape Project PACER - a comprehensive Shwachman-Diamond Syndrome education manual and course. Co-created by patients, caregivers, and medical experts. PCORI-funded initiative.
2025 Impact Report: How the SDS Community Is Advancing Research Toward Therapies
Read the 2025 SDS Alliance Impact Report to see how patient voice, research strategy, and collaboration are advancing therapies for Shwachman-Diamond Syndrome.
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