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All Blogs & News
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.
SDS Community Member
Nov 3
Understanding Your Genetic Testing Report: Key Elements for the Shwachman-Diamond Syndrome (SDS) Community and Why it Matters
Learn why a genetic diagnosis is essential for confirming Shwachman-Diamond Syndrome (SDS). Understand your test report, SBDS gene results, and how to join SDS-GPS.
SDS Alliance Team
Nov 3
SDS Patient LENS Study Now Open
Apply today. SDS Alliance open a new qualitative research study -- the SDS Patient LENS Study -- to understand the unique lived experiences,
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