Myhre Syndrome Foundation


Empowering exceptional families with every fiber of our being…

Myhre Syndrome is a rare genetic disease first described by Dr. Selma A. Myhre, an American pediatrician, in 1981. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. There are less than 200 confirmed cases of Myhre Syndrome worldwide and true numbers are unknown. Our foundation hears of new cases each year as awareness grows.

Myhre Syndrome Foundation is dedicated to serving Myhre syndrome families by providing a network of hope and support and collaborating with scientific and medical communities to encourage and fund promising research.

Our goals are simple –

  • To educate the public and the medical community to ensure early diagnosis and proper treatment;

  • To promote safe and effective treatments through advocacy, research funding and a comprehensive patient registry;

  • To provide a caring and supporting community for Myhre patients and families;

Join us.


What is myhre syndrome?

Learn more about the syndrome, its causes and why we are so passionate to find a cure.


ways to help

Learn how you can help us in our mission.

What’s new?

Click HERE for the latest MSF updates.