Myhre Syndrome Foundation

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Myhre Syndrome Foundation is dedicated to serving Myhre syndrome families by providing a network of hope and support. Join us. (MSF is a 501c(3) charity ) 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.

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834086943

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Richardson

Address: 25 Creekwood Cir, RichardsonWeb: Sign in to see organisation websiteX (Twitter): MyhreSyndromeEmployees: 1Revenue: 853869ICO: 834086943

Myhre Syndrome Foundation Your Custom Text Here Latest News New Research Grant for Fibrosis We are proud to announce a 450000 grant to fund a groundbreaking research project designed by Genethon collaborating with Professor Valerie CormierDaire Genomic Medicine Service for Rare Diseases NeckerEnfants Malades Hospital in France. Read more here Myhre Masterpieces Art Auction for Rare Disease Day Were thrilled to announce a special Rare Disease Day 2025 eventthe Myhre Masterpieces Art Auction. Were inviting members of the Myhre community to create oneofakind artworks that will be featured in our art auction. Learn more here New Data from Patient Registry We are delighted to share the latest Myhre Syndrome Patient Registry data and we want to express our gratitude to the Scientific Committee for creating the report.

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Martin

Amazing news about the $450,000 grant! Together, we are working towards a brighter future for all Myhre syndrome families! Let's keep the momentum going and continue to support one another! πŸ™ŒπŸŒŸ

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Peter

So inspiring to see the Myhre Syndrome Foundation making strides in research and support for our community! Can’t wait for the Myhre Masterpieces Art Auction – what a beautiful way to showcase our voices! πŸ’™βœ¨

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Emil

What strategies can the Myhre Syndrome Foundation implement to increase participation in the Patient Registry to reach the goal of 100 countries represented?

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Miriam

How can art and creative expression, like the Myhre Masterpieces Art Auction, contribute to raising awareness and building community support for families affected by Myhre syndrome?

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