All Blogs & News

Infographic titled 'Your Data is Safe, Your Voice Matters' with the SDS-GPS and SDS Alliance logos. Features an illustration of a person holding a shield with a checkmark next to a locked phone screen. Four bullet points list privacy commitments: Your name stays with us — only de-identified data is shared with researchers, IRB-approved protocol required. No patient list is ever shared — third parties never receive any identifying information, no exception. You stay in control — withdraw anytime, full transparency through informed consent. Data protected like in a bank — highest encryption standards, secure US servers, GDPR compliant, meets FDA requirements.

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.

SDS Alliance News

Eszter Hars, PhD

Apr 28

SDS child with family on vacation, getting ready for a medical procedure

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 Patient Stories and News

SDS Community Member

Nov 3, 2025

young adult person living with Shwachman-Diamond Syndrome shares his lived experience with the FDA at SDS PFDD meeting

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.