We're so excited to announce our very first community camp, happening at Camp Cole in South Carolina from Friday, August 20th to Sunday, August 22nd, 2027! 

My Story Begins Here
My name is Haley Murray. I am 31 years old and live in California. I am a high school science teacher for an online independent study program, and I was diagnosed with Myhre syndrome as an adult at 29 years old, just two years ago. Like many adults with rare diseases, I spent decades searching for answers without realizing they were all connected. Looking back now, I can finally see how all the pieces of my life fit together.

The Myhre Syndrome Foundation has joined more than 160 rare disease advocacy organizations in supporting a petition for rulemaking submitted to the U.S. Food and Drug Administration by the Haystack Project.

Hollis from Arkansas has found her passion for pageants and is thriving. With multiple titles over the last 12 months, she has just won another state title on the Cinderella pageant circuit, competing against typical contestants. This latest win will see her compete in the Cinderella Internationals in Texas in July.

At MSF, we’re delighted to announce that Armelle Pindon, our Chief Scientific Officer, is part of the external advisory committee for the 3D-MOFIB program at NCATS (The National Center for Advancing Translational Sciences), a US government research agency under the National Institutes of Health (NIH). 

The MSF is excited to announce that, thanks to research funding from our community donors, we now have a new mouse model, the p.R496C variant.

The MSF has reached a major milestone in research development: our pre-clinical in vitro platform is now ready! But what does this all mean? We’re happy to break it down for you and use a simple analogy to help bring this to life.

The MSF has been named a founding member of the New Approach Methodologies Developer Coalition (NAMs-DC), a new initiative led by the Critical Path Institute that is changing how drugs get developed.

MSF is excited to be funding Dr. Mo's Lab for Myhre syndrome SMAD4 specific studies. Learn more about their latest findings.

NORD has expanded its Rare Disease Centers of Excellence Network to 46 institutions nationwide by adding seven new leading medical and research centers committed to improving rare disease care and research.