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All Blogs & News
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.
Eszter Hars, PhD
3 days ago
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.
Eszter Hars, PhD
Apr 2
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