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All Blogs & News


How to Fundraise for Shwachman-Diamond Syndrome Research: A Free Guide for Families and Supporters
SDS Alliance's free fundraising guide helps families and supporters raise funds for Shwachman-Diamond Syndrome research — on their own terms, at any level.

Eszter Hars, PhD
May 30


Your Data is Safe: What Newly Diagnosed SDS Families Need to Know About SDS-GPS
Newly diagnosed with Shwachman-Diamond Syndrome? Learn how SDS-GPS protects your privacy while helping advance research and therapies for SDS.

Eszter Hars, PhD
Apr 28


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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