SDS & Science News

Our weekly blog to keep you up-to-date on cutting-edge publications and advocacy advances, relevant to SDS

SDS & Science Snapshots (2022-08-21)

In this issue: What is Congenital Exocrine Pancreatic Insufficiency; Can genetic disorders be treated in the womb? A case report in...

SDS & Science Snapshots (2022-07-31)

In this issue: What is a protein 3D structure and why it matters; New article on the structure and dynamics of the SBDS protein; DeepMind...

SDS & Science Snapshots (2022-07-23)

In this issue: What is neutropenia and how does it happen in SDS; Study highlights the multibillion dollar burden of rare disease Welcome...

Updates on specific projects relevant to science, research, and therapy development

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)...

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

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...

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...

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.

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...

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...

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...