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Family-Reported NSAID Survey: An Early Signal for Research
In June 2026, the MED13L Foundation surveyed families about their children’s use of NSAIDs, including ibuprofen, following repeated reports of changes that appeared to extend beyond expected effects on fever…
MED13L Foundation Joins Multi-Foundation Research Collaboration with Johns Hopkins to Advance Novel RNA Therapeutic Platform
Collaborative initiative will evaluate an innovative RNA-based strategy to restore gene expression and accelerate therapeutic development for MED13L Syndrome and other rare neurodevelopmental disorders. CHICAGO, IL – August 5, 2026 –…
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MED13L Foundation Funds UCSF CRISPRa Study for MED13L Haploinsufficiency
Friday, December 5th, 2025 The MED13L Foundation is pleased to announce the execution of a Sponsored Research Agreement with the University of California, San Francisco (UCSF) to support a new…
Brain & Life Magazine: How Families Are Leading the Charge in Rare Disease Advocacy
A recent article in Brain & Life highlights the powerful role of families in rare disease advocacy—including the efforts of MED13L Syndrome parents. The piece showcases how grassroots advocacy drives research and awareness for…
MED13L Foundation to Launch Natural History Study of MED13L Syndrome with Boston Children’s Hospital
As featured in Brain & Life Magazine BOSTON, May 5, 2025 — The MED13L Foundation today announced a nearly $250,000 grant to help launch an innovative natural history study at…
Naproxen Shown to Upregulate MED13L.
One step closer to a therapeutic treatment. Could it be this easy? We Have a Hit! Rarebase Delivers. It’s not a home run, but a solid double from Rarebase! After…
Our Strength Is In Our Numbers
Friends, I wanted to take this opportunity to share our family’s MED13L story and express our profound gratitude for the MED13L Foundation and organizations like RARE-X that support the Foundation…
Making Rare Mean Recognized, Not Forgotten
On February 26, 2024, I had the privilege, alongside nearly 1,000 other rare disease advocates, to speak to members of Congress and share my son Collin’s story and the challenges…
Join us! World MED13L Syndrome Day 2023
Have you been wanting to get involved in the MED13L Foundation? Here is a great way! We are starting to plan for… World MED13L Syndrome Day – 2023 …and we…
Inspired by Hope & Driven by Love
It seems to me, we hope throughout our lives. When we’re young, we hope good things happen. As we age, we hope bad things don’t happen. In the end, we…
