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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

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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

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