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Hands holding a spiral-bound copy of the Shwachman-Diamond Syndrome Voice of the Patient Report, from the Externally-Led Patient Focused Drug Development Meeting held in Cincinnati, OH on June 4th, 2025.

One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already at Work

The Shwachman-Diamond Syndrome Voice of the Patient report is now published and submitted to the FDA. Learn what the EL-PFDD meeting captured, how the report is used, and what comes next.

SDS Spotlight

Eszter Hars, PhD

Jun 4

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

Project PACER: Building Shwachman-Diamond Syndrome Education Together

Take our 5-minute survey to shape Project PACER - a comprehensive Shwachman-Diamond Syndrome education manual and course. Co-created by patients, caregivers, and medical experts. PCORI-funded initiative.

SDS Learning Resources

Eszter Hars, PhD

Mar 5

All Blogs & News

One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already at Work

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

Project PACER: Building Shwachman-Diamond Syndrome Education Together

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