SDS & Science Snapshots (2024-11-02)
In this issue: The SDS Alliance team is ready for Global SDS Awareness Day and Action Week! A recap of the CZI Science in Society meeting.
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SDS Alliance News
Nov 2
Announcing the Winners of the 2024 Million Steps Closer to #CureSDS Challenge
In this issue: The results of the 2024 Million Steps Closer to #CureSDS Challenges are in!
Nov 2
Celebrating Inaugural Global SDS Awareness Day and Action Week: November 1-7
In this issue: SDS Alliance raises awareness about Shwachman-Diamond Syndrome and inspires action in the community
Oct 12
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.
Aug 17
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
Jul 13
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!
Apr 20
SDS Alliance Presents at the International INNOCHRON Scientific Meeting. SDS & Science Snapshots (2024-04-20)
In this issue: SDS Alliance highlights the patient voice at the international INNOCHRON meeting in Greece! Welcome to our timely updates...
Feb 11
How Elijah inspired Hero Kids in the Making - an SDS Story from the US
I wanted my son to see himself as a brave hero overcoming his reasonable fears associated with the pain and uncharted aspects of his medical
Dec 2, 2023
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
Oct 21, 2023
2023 Annual Global Virtual Fundraiser - 4 Million Steps Closer to #CureSDS - Huge Success
This October, we conducted the 4th annual global virtual fundraiser to support SDS research. The theme this year was 4 MILLION STEPS...
Oct 9, 2023
SDS Community Represented at the Chan Zuckerberg Initiative's Science and Society Meeting
This September, we took to opportunity to introduce the Shwachman-Diamond Syndrome community at the Chan Zuckerberg Initiative (CZI)...
Aug 8, 2023
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...
Jan 15, 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...
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.
Oct 22, 2022
2022 Annual Global Virtual Fundraiser - Three Million Steps Closer to #CureSDS - Huge Success Again
This October, we conducted the third annual global virtual fundraiser to support SDS research. The theme this year was THREE MILLION...
Oct 4, 2022
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...
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
Apr 23, 2022
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....
Feb 2, 2022
Introducing Ribo & Somi, the RIBOSOME Superheroes
The last day of February is Rare Disease Day, but for us - rare disease families and advocates - every day is rare disease day. But no...
Jan 29, 2022
Our Team is Growing: Welcome Lisa Superina as our new Family and Community Engagement Ambassador.
Lisa lives on Long Island, New York, with her husband and four daughters. Her two youngest daughters, Nora and Kayla, were genetically...
Nov 3, 2021
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...
Oct 10, 2021
2021 Annual Global Virtual Fundraiser - Two Million Steps Closer to #CureSDS - Huge Success
At the end of September, we conducted the second annual global virtual fundraiser to support SDS research. The theme this year was TWO...
Sep 30, 2021
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...
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.
May 29, 2021
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.
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...
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