SDS Alliance shares ideas at new FDA Rare Disease Innovation Hub kick-off Meeting. SDS & Science Snapshots (2024-10-26)
In this issue: SDS Alliance shares ideas at new FDA Rare Disease Innovation Hub kick-off Meeting.
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News and Events
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Join us live this fall at SDS POPS, our global virtual patient advocacy and partnering summit.
SDS and Community News
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Featured News on News and Events
New Publication by the SDS Alliance Highlights SDS as a Therapeutic Target. SDS & Science Snapshots (2024-08-17)
New Publication by the SDS Alliance. From Challenge to Opportunity: How Shwachman-Diamond Syndrome Became a Promising Target for Therapy Dev
Free Genomic Sequencing for SDS through New Collaboration with Rare Genomes Project. SDS & Science Snapshots (2024-07-13)
In this issue: New research genetic testing opportunity for individuals suspected to have SDS!
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...
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...
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.
SDS Alliance meets with the White House Cancer Moonshot Team
September 30th is Rare Cancer Day. We marked the day by taking action and meeting with the White House Cancer Moonshot initiative in...
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
Dr. Eszter Hars chosen by The Milken Institute to join FasterCures LeaderLink Program
SDS Alliance’s President and CEO, Eszter Hars Ph.D., has been chosen by The Milken Institute to join the FasterCures LeadersLink Program....
SDS Alliance Awarded Chan Zuckerberg Initiative “Rare As One” Grant
Woburn, MA (November 3rd, 2021) — The SDS Alliance is delighted to announce that the organization has been awarded a prestigious grant...
Elevating Shwachman-Diamond Syndrome's Standing
From the Founder, Dr. Eszter Hars, Ph.D. This week, I had the incredible honor to be invited to speak at the 2021 Global Genes RARE...
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.
The SDS Alliance Launches Mouse Model Project with The Jackson Laboratory
SDS Alliance has just launched a project with The Jackson Laboratory to develop an SDS mouse model—the key first step toward a cure for SDS.
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...
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