Rare Disease Day 2022

Celebrate Rare Disease Day with MDF!

February 28th, 2022

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 Myotonic Dystrophy 

Be a Myotonic Dystrophy Advocate for Rare Disease Day (RDD) on February 28th! Join us to make myotonic dystrophy one of the most prominent voices raised this month! Use MDF's advocacy letter template to send a personalized message to your elected representatives or setup a meeting with their staff. Make sure to take advantage of our quick reference talking points and advocacy priority list! Click here to learn more about MDF's advocacy plans for 2022! Looking for more advocacy support? 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.

The Marigold Foundation - Learn more about myotonic dystrophy & health care costs with the Marigold Foundation's recent publication entitled, "Healthcare resource utilization, total costs, and comorbidities among patients with myotonic dystrophy using U.S. insurance claims data from 2012 to 2019." The study interrogated health insurance claims data to explore the clinical experience, healthcare resource utilization (HCRU), and all-cause costs for DM. Click here to read the full open access publication!

Jackson Lab (JAX) - In honor of Rare Disease Day, the Jackson Lab (JAX) launched a new e-book chronicling the rare disease odyssey through beautiful imagery and storytelling. Use this resource as an opportunity to connect with the community and learn about the important role that research plays in the fight against rare diseases like myotonic dystrophy. Click here to download the e-book on JAX’s website!

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.

 

Date(s):: 
Monday, February 28, 2022

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