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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
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…
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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…
December 2022 Office Hours
On December 6, 2022 Board Members Vanessa Dias and Katie Boychuck took some time to come into a zoom call and answer questions. It was a great success and we…
CURE MED13L Takes a Leap Forward
The Finding a Drug Discovery Partner (First) Edition of the Newsletter (10/17/21) Hello CURE MED13L Community! I’m Nick Seaver and this is the inaugural edition of the CURE MED13L newsletter. I can’t…
April 2023 Family Meet Up
Hello MED13L Families, The MED13L Foundation is coordinating an in-person Family Meet Up on Sunday April 30th, 2023 at the Adventure Aquarium in Camden, NJ at 11:30 am, with a 3:00…
The Road Forward
A week ago we hit a high point for the MED13L Foundation. The wonderful research team at Combined Brain completed their many month review of all things MED13L Syndrome and…
