SDS & Science Snapshots (2024-04-20)In this issue: SDS Alliance highlights the patient voice at the international INNOCHRON meeting in Greece! Welcome to our timely updates...
SDS & Science Snapshots (2024-04-13)In this issue: New research opportunity for siblings to individuals with SDS!
SDS & Science Snapshots (2024-04-06)In this issue: What are experts saying about the importance of genetic testing in individuals with bone marrow failure?
Aug 8, 2023Shwachman-Diamond Syndrome Receives ICD-10 Code, Paving the Way for Improved Care and TherapiesShwachman-Diamond Syndrome receives new ICD-10 Diagnostic Code, Paving the Way For Improved Patient Care and New Treatment Options. Code...
Mar 26, 2023SDS & Science Snapshots (2023-03-25)In this issue: New proof-of-concept article on RNA Therapeutics and Base/Prime Editing for SDS; And, a review of diagnostic testing for...
Jan 15, 2023SDS & Science Snapshots (2023-01-14)In this issue: Comprehensive review article on bone marrow surveillance of SDS patients by Drs. Shimamura and Reilly; and a recap of ASH...
Dec 11, 2022SDS Cell Biobank Pilot Project a success!After the successful launch of the mouse model project last year and advancing it to phase two this year, we have expanded our efforts to...
Dec 3, 2022SDS Alliance Meets with the FDADr. Eszter Hars (SDS Alliance president and CEO) joined the FDA CBER OTAT Patient-Focused Drug Development Listening Meeting.
Sep 8, 2022SDS Alliance is Awarded JumpStart Grant for iPSC DevelopmentWe are so honored and excited to announce that we won the JumpStart Research Tools Matching Grant through The Orphan Disease Center (ODC)...