International Myotonic Dystrophy Awareness Day

September 15th, 2021

Join the global alliance to raise awareness of myotonic dystrophy!

 

International Myotonic Dystrophy Awareness Day aims to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with disease, and holds great promise for helping individuals with similar genetic diseases like Fragile X syndrome and Huntington’s disease.

Read the Joint Press Release

Read the joint Press Release here and explore more about the global alliance members below.

Join the Movement!

If you are a group, organization, hospital, academic institution or company interested in officially joining the global alliance to raise awareness of myotonic dystrophy and would like to add your name and logo to the team, please complete this form.

If you are a community member interested in helping raise awareness of the disease, please click the logo of the organization below that is closest to your geographic area to learn how they are promoting International Myotonic Dystrophy Awareness Day and how you can get involved!

Community Logo Design Contest

Vote for your favorite International Myotonic Dystrophy Awareness Day logo! Thank you to all our artistic, creative community members who submitted a design. Winners will be notified at the close of the public vote. Let us know which community submitted design is your favorite by May 24th! Share the survey with your friends and make your voice heard! Click here to vote for the official International Myotonic Dystrophy Awareness Day logo!

July 24th, 2021 – International Myotonic Dystrophy Family Day

In addition to the International Myotonic Dystrophy Awareness Day in September, we will continue to celebrate the annual International DM Family day in July. Those living with DM sometimes feel isolated and overwhelmed. The Family Day is for the community to come together to support each other in a day of fun, to share stories and experiences within groups, a day to meet up with others and feel part of something bigger. Click here to see how we have celebrated in the past and for ideas on how you can join in for 2021.

Myotonic Dystrophy Resources for Healthcare Providers and People Living with DM

Clinical Care Guidelines for DM1 and DM2, toolkits, and anesthesia guidelines available in multiple languages. Physical therapy, exercise, nutrition, and other guides posted as well. Click here to access the DM resources available.

Click here to find videos of presentations and programs by DM experts.

Our Global Alliance

Members listed alphabetically by country. An * indicates a founding member of the Myotonic Dystrophy Awareness Global Alliance.

Australia - MDA Australia*

 
 

Denmark - Muskelsvindfonden*
 

Europe - Euro-DyMA*
 

 

France - AFM-Téléthon*
 

 

Netherlands - Stichting MD (Nederland)*
 

 

Netherlands - Spierziekten Nederland*
 

 

United Kingdom - Cure DM Myotonic Dystrophy UK*
 

 

United Kingdom - Muscular Dystrophy UK*
 

 
 

USA - AskBio
 

 

USA - Dyne Therapeutics
 

 
 
 

USA - PepGen
 

 

USA - University of Utah
 

 

An * indicates a founding member of the Myotonic Dystrophy Awareness Global Alliance.

If you are a group, organization, hospital, academic institution or company interested in officially joining the global alliance to raise awareness of myotonic dystrophy and would like to add your name and logo to the team, please complete this form.

 

Date(s): 
Wednesday, September 15, 2021

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