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Featured News & Events
Featured News
Featured News on News and Events
One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already at Work
The Shwachman-Diamond Syndrome Voice of the Patient report is now published and submitted to the FDA. Learn what the EL-PFDD meeting captured, how the report is used, and what comes next.
How to Fundraise for Shwachman-Diamond Syndrome Research: A Free Guide for Families and Supporters
SDS Alliance's free fundraising guide helps families and supporters raise funds for Shwachman-Diamond Syndrome research — on their own terms, at any level.
SDS Alliance Receives Grant from RTW Foundation to Advance Prime Editing Gene Therapy for Shwachman-Diamond Syndrome
SDS Alliance announces a grant from RTW Foundation supporting prime editing gene therapy research for SDS at Boston Children's Hospital. #CureSDS
2025 Impact Report: How the SDS Community Is Advancing Research Toward Therapies
Read the 2025 SDS Alliance Impact Report to see how patient voice, research strategy, and collaboration are advancing therapies for Shwachman-Diamond Syndrome.
SDS Alliance awarded PCORI Engagement Award funding to build capacity for patient-centered CER for Shwachman-Diamond Syndrome.
We are pleased to announce that the Shwachman-Diamond Syndrome Alliance (SDS Alliance) has been awarded funding through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support building capacity for patient-centered Comparative Clinical Effectiveness Research (CER) on Shwachman-Diamond Syndrome (SDS), or Project PACER for short.
FDA provides positive feedback on the SDS EL-PFDD meeting, valuing the Patient Voice
Externally-Led Patient Focused Drug Development Meeting for Shwachman-Diamond Syndrome (SDS PFDD meeting) successfully delivers patient voice to the FDA, drug developers, and other stakeholder.
Reflections from Cincinnati 2025 and impact of the patient voice
Our reflections. Cincinnati hosted two key events for SDS in June 2025: the SDS PFDD meeting and the International Scientific Congress on Shwachman-Diamond Syndrome
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,
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
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 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.
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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