We’re thrilled to announce the opening of a dedicated Myhre Syndrome Clinic at Stanford University’s Cardiovascular Connective Tissue Clinic in California, USA. This clinic brings together experts in genetics, cardiology, and other specialties to provide personalized care for patients and families while advancing research into Myhre syndrome.
Read moreMSF Personal Essay in the American Journal of Medical Genetics
Last year, we were approached to submit an essay for the American Journal of Medical Genetics discussing the work we’re doing at the foundation. Kate Wears, our Executive Director, jumped at the chance to raise awareness and share the foundation’s mission with a wider audience.
Read moreiPSCs in Development for Myhre Syndrome
In June, we announced we'd be able to provide researchers with patient-derived iPS cell lines to accelerate our understanding of Myhre syndrome.
Read moreResearch Tools
Over the last few months, we’ve outlined our plans to accelerate treatment discovery and the potential pathway to a cure for Myhre syndrome.
Read moreThe Power of Patient Data to Accelerate Research
There are numerous avenues to get involved in research and provide data, learn more here.
Read moreNew Discovery Committee to Advance Research
In March 2024 we formed a Discovery Committee to discover, develop, and make available treatments or a cure for Myhre syndrome.
Read moreIntroducing the new Clinical Research Assistant at MGH
Get to know Maggie Brand, the new Clinical Research Assistant at the Myhre Clinic at MGH.
Read moreHelping School Providers with Best Practices
This is a short guide for educators on how they can support children and young adults with Myhre syndrome. We encourage you to send this link or print this article to give to them.
Read moreGenetics Refresher from Dr Angela Lin
Dr Angela Lin, co-director of the Myhre Syndrome Clinic at Massachusetts Hospital in Boston, provided a genetics refresher.
Read moreFunding Clinics to Advance Knowledge of Myhre Syndrome
Myhre Syndrome Foundation (MSF) is committed to the advancement of Myhre syndrome clinics across the world. Clinics provide vital on-the-ground community support and contribute to ongoing global research.
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