Latest News
-
At the 2024 International Myhre Family Conference, we collected over 30 samples from people with Myhre and their siblings.
We are indebted to them for advancing research and knowledge about Myhre syndrome.
To learn how Myhre syndrome progresses, we need to collect new samples each year from our cohort. If you have given a sample or want to give your first sample, you can visit one of the roadshows below.. Read more here -
We are excited to announce that the next Myhre Syndrome Foundation Family & Patient Conference will take place in London on July 25th & 26th, 2026! Read more here and sign up for updates.
-
Read about the 2024 activities and the many achievements our community made possible.
What do we do?
Myhre Syndrome Foundation is a patient advocacy organization dedicated to providing hope and improving the lives of those impacted by Myhre syndrome.
We foster collaboration among all relevant stakeholders to build a strong, global community in order to advance research, as well as support, educate and advocate for those impacted by Myhre syndrome.
Myhre Syndrome
Myhre syndrome is an extremely rare genetic disorder, caused by a mutation in the SMAD4 gene. There are less than 200 confirmed cases of Myhre syndrome worldwide and true numbers are unknown. We hear of new cases each year as awareness grows.
You can see a map here of where people with Myhre and their families live.
