Myhre Syndrome Foundation
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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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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Together, we can make a real impact in communities around the world. Help us bring hope and support.
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From Social media
News about Myhre Syndrome Foundation from their social media (Facebook and X).
- Myhre Syndrome Foundation
- 2023-12-06
If you have room on your list, we’d love your support in finding treatments for the Myhre community. (tw) ... more
Liked (4) Commented (0)
- Myhre Syndrome Foundation
- 2023-11-28
Join us this Giving Tuesday to help fund our mission to find treatments. (tw) ... more
Liked (5) Commented (0)Discussions
Odpovědí v diskuzi
1
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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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
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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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
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! 💙✨
Brooklyn Simmons
Product Manager
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! 🙌🌟
Brooklyn Simmons
Product Manager
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Kendall Monroe
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I work in a nonprofit and listing our organization on Eduo.org helped us reach new audiences and even new volunteers. It’s easy to use and feels built with love.
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As a volunteer, I love how Eduo.org empowers people to contribute locally. It feels like Wikipedia for good deeds — written by the people, for the people.
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As a volunteer, I love how Eduo.org empowers people to contribute locally. It feels like Wikipedia for good deeds — written by the people, for the people.
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I stumbled on Eduo by accident and ended up spending hours learning about different charities across the world. It’s like a global map of goodness
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A brilliant resource for anyone who wants to do good more effectively.
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Simple interface, deep purpose. Eduo makes it easy for everyday people to become part of a global community doing good.
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Eduo is where compassion meets clarity.
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I stumbled on Eduo by accident and ended up spending hours learning about different charities across the world. It’s like a global map of goodness
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Product Manager
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