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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.
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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.
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Apr 28
Octavian's SDS Story 2: A Rare Gem with EFL1, Year Two
One year has passed since we have shared with you all our first year as a family of 4.
In our first chapter we have discussed about our journey from noticing that something might be wrong with our Octavian and the long and intense journey of getting the right diagnosis, finding the right medical center and medical team to provide Octavian the care he needs and concluded with a strong statement of acceptance and a promise to live life the fullest despite SDS.
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Nov 3, 2025
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