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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.
Introducing Monthly Giving Allies: How Small Monthly Gifts Help Accelerate SDS Research and #CureSDS
Learn how the SDS Alliance’s Monthly Giving Allies program helps fund research, support therapy development, and build momentum toward clinical trials for Shwachman-Diamond syndrome (SDS). Even small monthly donations make a meaningful impact.
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