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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.
FDA provides positive feedback on the SDS EL-PFDD meeting, valuing the Patient Voice
Externally-Led Patient Focused Drug Development Meeting for Shwachman-Diamond Syndrome (SDS PFDD meeting) successfully delivers patient voice to the FDA, drug developers, and other stakeholder.
Reflections from Cincinnati 2025 and impact of the patient voice
Our reflections. Cincinnati hosted two key events for SDS in June 2025: the SDS PFDD meeting and the International Scientific Congress on Shwachman-Diamond Syndrome
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