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SDS & Science News
SDS & Science Snapshots
Our weekly blog to keep you up-to-date on cutting-edge publications and advocacy advances, relevant to SDS
SDS Patient LENS Study Now Open
Apply today. SDS Alliance open a new qualitative research study -- the SDS Patient LENS Study -- to understand the unique lived experiences,
Amazing Opportunity to Share SDS Patient Perspectives with FDA: EL-PFDD Meeting Planned June 4th, 2025
Be a Speaker/Panelist! The FDA has accepted our request to hold an Externally-Led Patient Focused Drug Development Meeting for SDS on 6/4/25
SDS-POPS 2024 Recordings and Resources Now Available! SDS Alliance Blog 2024-12-08
In this issue: SDS-POPS 2024 covers a wider range of topics, including SDS patient voice, stories, film, and advocacy, and SDS research and
SDS Science News
Updates on specific projects relevant to science, research, and therapy development
SDS Patient LENS Study Now Open
Apply today. SDS Alliance open a new qualitative research study -- the SDS Patient LENS Study -- to understand the unique lived experiences,
Feb 1
Register for Community Webinar and Q&A to prep for SDS PFDD Meeting
Join the community webinar and Q&A session to learn all about the EL-PFDD meeting on Shwachman-Diamond Syndrome and get answers about it all
Jan 18
Amazing Opportunity to Share SDS Patient Perspectives with FDA: EL-PFDD Meeting Planned June 4th, 2025
Be a Speaker/Panelist! The FDA has accepted our request to hold an Externally-Led Patient Focused Drug Development Meeting for SDS on 6/4/25
Jan 7
SDS-POPS 2024 Recordings and Resources Now Available! SDS Alliance Blog 2024-12-08
In this issue: SDS-POPS 2024 covers a wider range of topics, including SDS patient voice, stories, film, and advocacy, and SDS research and
Dec 8, 2024
Shwachman-Diamond Syndrome Receives ICD-10 Code, Paving the Way for Improved Care and Therapies
Shwachman-Diamond Syndrome receives new ICD-10 Diagnostic Code, Paving the Way For Improved Patient Care and New Treatment Options. Code...
Aug 8, 2023
SDS & 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...
Mar 26, 2023
SDS & 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...
Jan 15, 2023
SDS 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 11, 2022
SDS Alliance Meets with the FDA
Dr. Eszter Hars (SDS Alliance president and CEO) joined the FDA CBER OTAT Patient-Focused Drug Development Listening Meeting.
Dec 3, 2022
SDS Alliance is Awarded JumpStart Grant for iPSC Development
We are so honored and excited to announce that we won the JumpStart Research Tools Matching Grant through The Orphan Disease Center (ODC)...
Sep 8, 2022
Mouse Model Project Update: Phase I complete!
We are happy to report that Jackson Laboratory has completed the first phase of the project. They have created mice in which a large segment
Aug 29, 2022
Bringing Shwachman-Diamond Syndrome to the Forefront
From the Founder, Dr. Eszter Hars, Ph.D. This week, I had the great honor to be invited to speak on a patient-centered panel at the NICER...
Sep 25, 2021
Mouse Model Project: Meet the Scientists!
From the Founder, Dr. Eszter Hars Dear SDS community, I am so excited to have been able to launch this project. To recap: This project is...
Jul 7, 2021
Advocating for SDS Research at Rare Drug Development Symposium
This week, I had the great honor to present at the 2021 Rare Drug Development Symposium, hosted by Global Genes and the UPenn ODC.
Jun 13, 2021
A Cure for SDS: Our Mission
From the Founder, Dr. Eszter Hars “Mom, why do I have SDS? Why can’t I be like everyone else?” my daughter asks me… Imagine a world...
Jan 15, 2021
Bone marrow-on-a-chip provides new research directions for Shwachman-Diamond syndrome
Boston Children's Hospital's Discoveries Blog features this exciting story about SDS research. Read the full story, here. In a research...
Jan 27, 2020
The North American SDS Registry celebrates its 10 year anniversary by giving back to the community
The SDS Registry celebrated by hosting the SDS Family Day (conference) in Boston, MA, US. A summary of the event was published by the SDS...
Dec 20, 2019
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