Celebrate Rare Disease Day with MDF!
February 28th, 2023
Rare Disease Day is a worldwide event designed to improve the lives of millions of people living with rare diseases by raising awareness among policy makers, the scientific community and the general public. It was launched in 2008 by EURODIS and takes place on the last day of February each year in more than 65 nations. The U.S. program is led by NORD.
Join us to make myotonic dystrophy one of the most prominent disease voices raised this month! Find Rare Disese Day events across the globe on the official RDD website.
Advocate for the Myotonic Dystrophy Community
Be a Myotonic Dystrophy Advocate for Rare Disease Day! Join us for our annual Rare Disease Day Advocacy Workshop for everyone in the myotonic dystrophy community to learn more about our advocacy priorities and how you can help increase federal funding for myotonic dystrophy research. Click here to register for our Advocacy Workshop!
Looking for more ways to support MDF's advocacy efforts? Click here to find all of MDF's advocacy resources.
Participate in Clinical Research
People living with myotonic dystrophy have been active partners in bringing clinical research to this point, by supporting and participating in studies, joining registries, responding to surveys, and funding patient advocacy organizations. Click here to learn about myotonic dystrophy studies and trials.
Join the Myotonic Dystrophy Family Registry (MDFR)
If you’ve been diagnosed with DM1 or DM2, including congenital or juvenile onset, or are the primary caregiver for some who has, we need you! By participating in the Registry you can help researchers from industry and academia identify potential clinical trial participants and research study subjects, and increase understanding of the impact and complexity of this disease. Click here to join the Myotonic Dystrophy Family Registry.
Share Myotonic Dystrophy Resources
MDF Toolkits & Publications - Help your healthcare providers give you the best care by sharing the Clinical Care Guidelines for DM1 and DM2, toolkits, and anesthesia guidelines with them. Our resources are available in multiple languages with specialized guides for physical therapy, exercise, nutrition, and more! Click here to access all of MDF's downloadable resources.
Show Your Support for the Myotonc Dystrophy Community with Awareness Gear
Start conversations and raise DM awareness with branded T-shirts, masks, and mugs! Check out our new hats, water bottles, hoodies and fresh designs featuring MDF's mission of "Community, Care, & Cure". Get your myotonic dystrophy awareness swag now!
Join the Global Alliance for Myotonic Dystrophy Awareness
Over 50 organizations from across the world have joined to promote International Myotonic Dystrophy Awareness Day, which 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 the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease. Click here to learn more about the Global Alliance for Myotonic Dystrophy Awareness.