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Mockup of the new gene therapy perspectives survey for Shwachman-Diamond Syndrome SDS on our SDS-GPS research platform. Illustration of corrected DNA symbolizing the edited SBDS gene for SDS

Patient Voices Needed to Shape Gene Therapy for SDS — Two Opportunities to Make It Count

SDS Alliance has launched a gene therapy perspectives survey on SDS-GPS. Learn why patient input matters at this stage of research and how to participate — including the GeneTX interview study at St. Jude.

SDS Learning Resources

4 days ago

Example of a personalized SDS school trifold brochure generated by the SDS Alliance School Letter Tool, showing a student with photos, accommodation checklist, and emergency contact information, and links and QR codes Shwachman-Diamond Syndrome Alliance and the School Success with SDS guide.

New Resources for School Success with Shwachman-Diamond Syndrome — and How You Can Help Build More

SDS Alliance launches a free personalized school letter tool and comprehensive school guide for students with Shwachman-Diamond Syndrome — built by and for the SDS community.

SDS Alliance News

Aug 6

Logos for SDS Alliance, SDS-GPS, Across Healthcare, Matrix, Critical Path Institute, and RDCA-DAP, alongside an illustration of researchers reviewing multiple datasets on a shared data analysis interface.

Your Data, Reaching Further SDS-GPS Joins RDCA-DAP by C-Path

Your SDS-GPS data just gained international reach. Learn how a new integration with RDCA-DAP is helping turn patient experience into real progress toward SDS treatments, and what it means for your privacy.

SDS Alliance News

Jul 23

All Blogs & News

Patient Voices Needed to Shape Gene Therapy for SDS — Two Opportunities to Make It Count

New Resources for School Success with Shwachman-Diamond Syndrome — and How You Can Help Build More

Your Data, Reaching Further SDS-GPS Joins RDCA-DAP by C-Path

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