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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

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.

SDS Alliance News

Eszter Hars, PhD

Jul 16, 2025

Free Genomic Sequencing for SDS through New Collaboration with Rare Genomes Project. SDS & Science Snapshots (2024-07-13)

In this issue: New research genetic testing opportunity for individuals suspected to have SDS!

SDS Learning Resources

Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA

Jul 13, 2024

All Blogs & News

Your Data is Safe: What Newly Diagnosed SDS Families Need to Know About SDS-GPS

FDA provides positive feedback on the SDS EL-PFDD meeting, valuing the Patient Voice

Free Genomic Sequencing for SDS through New Collaboration with Rare Genomes Project. SDS & Science Snapshots (2024-07-13)

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