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Myhre Syndrome Foundation

25 Creekwood Circle
Richardson, TX, 75080
(202) 656-9473

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Myhre Syndrome Foundation

  • What is Myhre?
  • News
  • Events
  • Families
    • Family Resources
    • Emergency Information
    • Patient Registry
    • Handbook
    • London 2026
    • Shop
    • Myhre Family Map
  • Clinicians
    • Overview
    • Directory
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  • Researchers
    • Research Roadmap
    • Preclinical Platform
    • Material & Assays
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Exciting News: Myhre Syndrome Clinic Opens at Stanford!

November 22, 2024 Kate Wears

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.

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MSF Personal Essay in the American Journal of Medical Genetics

October 7, 2024 Kate Wears

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.

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iPSCs in Development for Myhre Syndrome

September 27, 2024 Justin Smith

In June, we announced we'd be able to provide researchers with patient-derived iPS cell lines to accelerate our understanding of Myhre syndrome.

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Research Tools

September 27, 2024 Justin Smith

Over the last few months, we’ve outlined our plans to accelerate treatment discovery and the potential pathway to a cure for Myhre syndrome.

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The Power of Patient Data to Accelerate Research

September 27, 2024 Kate Wears

There are numerous avenues to get involved in research and provide data, learn more here.

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New Discovery Committee to Advance Research

September 27, 2024 Justin Smith

In March 2024 we formed a Discovery Committee to discover, develop, and make available treatments or a cure for Myhre syndrome.

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Introducing the new Clinical Research Assistant at MGH

July 11, 2024 Kate Wears

Get to know Maggie Brand, the new Clinical Research Assistant at the Myhre Clinic at MGH.

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Helping School Providers with Best Practices

May 10, 2024 Kate Wears

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.

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Genetics Refresher from Dr Angela Lin

August 30, 2023 Kate Wears

Dr Angela Lin, co-director of the Myhre Syndrome Clinic at Massachusetts Hospital in Boston, provided a genetics refresher.

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Funding Clinics to Advance Knowledge of Myhre Syndrome

May 8, 2023 Kate Wears

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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