Osmosis Video on Shwachman-Diamond Syndrome Receives over 4K Views within a Month of Publication
Huge SDS advocacy and awareness win: Osmosis video on Shwachman-Diamond Syndrome receives thousands of views, with millions more to follow
top of page
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 & Science Snapshots (2023-11-25)
In this issue: The importance of knowing your family health history and how to have these delicate and powerful conversations
SDS & Science Snapshots (2023-11-18)
In this issue: New study reports the economic impact of a delayed diagnosis is up to $517,000 in avoidable costs per patient in rare disease
SDS Science News
Updates on specific projects relevant to science, research, and therapy development
- Aug 8
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...
- Mar 26
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...
- Jan 15
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...
- Dec 11, 2022
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 3, 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.
- Sep 8, 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)...
- Aug 29, 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
- Sep 25, 2021
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...
- Jul 7, 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...
- Jun 13, 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.
- Jan 15, 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 27, 2020
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...
- Dec 20, 2019
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...
bottom of page