??Young Investigators - Join us tomorrow for a Webinar on the #myotonicDystrophy Funding Landscape on March 13th!?? This exclusive Pre-Conference Webinar is designed to help you identify funding pathways, avoid common pitfalls, and gain insider tips on securing grants and fellowships.
Myotonic Dystrophy Foundation
非盈利组织
Oakland，California 1,413 位关注者
The world's largest patient organization focused solely on myotonic dystrophy. Our mission is Community, Care, & a Cure.
关于我们
We envision a world with treatments and a cure for myotonic dystrophy (DM). Our mission is Community, Care, and a Cure. We created the Myotonic Dystrophy Foundation (MDF) to enhance the quality of life of people living with myotonic dystrophy (DM) and to drive research focused on treatments and a cure. DM is an inherited disorder that can appear at any age and manifests differently in every person. MDF is the leading global advocate helping patients and families navigate the DM disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. For many international patients, MDF is often the only resources and support they are able to locate. Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up the MDF community. Based in Oakland, California, MDF partners with, and complements the work of, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other governmental, academic, and philanthropic agencies.
- 网站
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https://www.myotonic.org/
Myotonic Dystrophy Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Oakland，California
- 类型
- 非营利机构
- 创立
- 2007
- 领域
- Grants、Support Groups、Patient Advocacy、Education、Medical Education、Myotonic Dystrophy和Research Grants
地点
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主要
获取路线
663 13th St
Suite 100
US，California，Oakland，94612
Myotonic Dystrophy Foundation员工
动态
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??Dr. Andy Berglund, Director of the RNA Institute, & NY Senator Pat Fahy discuss federal funding cuts on #myotonicDystrophy research & academic research institutions. ??????Listen to their full discussion at: https://lnkd.in/eCSHJcmk
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??Young Investigators - Join us for a Webinar on the #myotonicDystrophy Funding Landscape on March 13th!?? This Pre-Conference Webinar is designed to help identify funding pathways and avoid common pitfalls. ??
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Myotonic Dystrophy Foundation转发了
There are over 10,000 different rare diseases that affect 300 million people worldwide. One in every ten people in the United States has a rare disease. Today is Rare Disease Day, and my feed has been flooded with zebras as people raise awareness and show support for families impacted by rare diseases. Show your stripes For me, this cause is deeply personal. My wife, Lisa Harvey Duren, has been featured in an article that sheds light on the challenges and advocacy efforts surrounding Myotonic Dystrophy—a disease that affects countless families yet remains widely misunderstood. Raising awareness is crucial, and so is taking action. We are in a critical time period. I am doing this also in honor of my mother-in-law who just lost her fight with Myotonic Dystrophy this week. Let’s continue to amplify the voices of those living with rare diseases. ???? #RareDiseaseDay #MyotonicDystrophy #Advocacy #RareButStrong #MDF #Myotonoic
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This #RareDisease Day, find community & support with 30+ topic & region based MDF Support Groups! ??? Connect with others in the DM community at an upcoming meeting! ????? Learn more at: https://lnkd.in/gW-GeHSq
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??Today is #RareDiseaseDay!??? Join us in raising awareness about #myotonicDystrophy all month long! ???? Find ways to get started at: https://lnkd.in/eGvgTqaC
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Myotonic Dystrophy Foundation转发了
??? The new IDMC-15 website is now online! ??? Explore the world of the 2026 International Myotonic Dystrophy Consortium Meeting at www.idmc15.org! ?? Subscribe to our mailing list and be the first to know about important dates, congress events, practical information (accommodation, catering, venues), and much more! ?? Registration opens on September 15 in honor of International Myotonic Dystrophy Awareness Day! We can't wait to connect with you! ???? #IDMC15 #MyotonicDystrophy #Science #Conference #Research #SaveTheDate https://www.idmc15.org/
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?? This #RareDiseaseDay, the Global Alliance for #myotonicDystrophyAwareness of 60+ orgs unite to advance care & research for #myotonicDystrophy, focusing on: ? Educating clinical teams ? Enhancing trial readiness ?? Help us change the future of DM! https://lnkd.in/eEAeF_tQ
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??#MyotonicDystrophy research & care at risk! ?? Funding cuts will stall research, delay treatments, & weaken healthcare access. Take 60 seconds to tell your lawmakers: Protect DM research & care NOW! ?? Every Email Makes a Difference! ?? #RareDiseaseDay https://lnkd.in/eZMtfMKs
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