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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
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    • Family Resources
    • Emergency Information
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Featured
Expanding Access to Specialized Care for Myhre Syndrome: New Clinics at Stanford and Texas Children’s Hospital
Jul 9, 2025
Expanding Access to Specialized Care for Myhre Syndrome: New Clinics at Stanford and Texas Children’s Hospital
Jul 9, 2025

In 2025, we are proud to continue our long-standing support of Dr. Angela Lin and her team at Massachusetts General Hospital, and to announce the launch of two newly funded clinical sites: one at Stanford Medicine Children’s Health and the other at Texas Children’s Hospital.

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Jul 9, 2025
FDA Myhre Patient and Family Listening Session
Jun 16, 2025
FDA Myhre Patient and Family Listening Session
Jun 16, 2025

To provide the FDA with a comprehensive understanding of Myhre syndrome, including the lived experiences of patients and caregivers, the community met with the FDA in December 2024. The full report is out now.

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Jun 16, 2025
Announcing New Research Partnership with Emory University
May 29, 2025
Announcing New Research Partnership with Emory University
May 29, 2025

We are excited to announce the launch of our new partnership with Emory University designed to shed light on the underlying molecular mechanisms of Myhre Syndrome and lay the foundation for future treatments.

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May 29, 2025
Genetically Modified T Cell Study Confirms Safety
May 27, 2025
Genetically Modified T Cell Study Confirms Safety
May 27, 2025

Genetically modified T cell therapies have been in the news for their ability to improve outcomes for cancer patients, and a recent longitudinal study confirmed that serious complications were extremely rare.

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May 27, 2025
Advancing Research and Hope: Exciting Development in Fibrosis Research
Feb 28, 2025
Advancing Research and Hope: Exciting Development in Fibrosis Research
Feb 28, 2025
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Feb 28, 2025
Medical Advisory Board Doctors Recognized for their Research Contributions
Feb 18, 2025
Medical Advisory Board Doctors Recognized for their Research Contributions
Feb 18, 2025

Congratulations to Dr. Callewaert and Pr. Cormier-Daire, who have won pretigous awards for their rare disease research.

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Feb 18, 2025
Research Grant to Explore New Therapy for Myhre Syndrome
Feb 13, 2025
Research Grant to Explore New Therapy for Myhre Syndrome
Feb 13, 2025

We are proud to announce a $450,000 grant to fund a groundbreaking research project designed by Genethon, collaborating with Professor Valérie Cormier-Daire (Genomic Medicine Service for Rare Diseases, Necker-Enfants Malades Hospital) in France.

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Feb 13, 2025
Myhre Masterpieces Art Auction for Rare Disease Day
Jan 8, 2025
Myhre Masterpieces Art Auction for Rare Disease Day
Jan 8, 2025

We’re thrilled to announce a special Rare Disease Day 2025 event—the Myhre Masterpieces Art Auction! We’re inviting members of the Myhre community to create one-of-a-kind artworks that will be featured in our art auction.

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Jan 8, 2025
Exciting News: Myhre Syndrome Clinic Opens at Stanford!
Nov 22, 2024
Exciting News: Myhre Syndrome Clinic Opens at Stanford!
Nov 22, 2024

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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Nov 22, 2024
MSF Personal Essay in the American Journal of Medical Genetics
Oct 7, 2024
MSF Personal Essay in the American Journal of Medical Genetics
Oct 7, 2024

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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Oct 7, 2024

 

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