What is Rare Disease Day?
Rare Disease Day (RDD) 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 Disease Day events across the globe on the official RDD website.
Ways You Can Get Involved!
Become a State Advocacy Captain
Your voice matters! Here's how you can take action:
- Email Congress for Rare Disease Day! Use MDF's Advocacy Center to quickly contact your Senators and Representatives!
- Attend MDF's CDMRP Advocacy Campaign Launch Webinar on Friday, March 13th at 12 PM Pacific / 3 PM Eastern to learn how to build congressional support for DM research! Click here to register now!
- Join MDF’s “Four Weeks of Power Advocacy”! After the webinar, advocates will request and lead meetings with congressional offices, with guidance and support from MDF every step of the way!
Together, we can ensure DM research remains a national priority! Click here to read MDF's full advocacy update!
Stay up-to-date with MDF's Advocacy Center! Click here to learn more about all of MDF's advocacy efforts! >>>
Watch MDF’s 2025 State Advocacy Training to learn about MDF’s advocacy priorities, the role of U.S. State Advocacy Captains, and simple ways to advocate for DM research funding at the federal level.
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.
- Share the Anesthesia Guidelines and 1-Page Quick Reference Guide with your Care Team: Regardless of the form of DM or the severity of DM symptoms experienced, you can have severe and life-threatening reactions to anesthesia and should be monitored carefully whenever anesthesia is administered.
- Share the Myotonic Dystrophy and the Heart: A Community Guide: This resource aims to help people living with DM understand heart health risks and how they are managed.
- Share the Myotonic Dystrophy and Mental Health Handbook: This handbook aims to provide information on many of the ways mental health can be impacted by DM.
- Share Clinical Care Guidelines with your Healthcare Provider!
- Learn about DM clinical trials and studies:
Show Your Support for the Myotonic Dystrophy Community with Awareness Gear
Start conversations and raise DM awareness with branded T-shirts, masks, and mugs! Check out our designs featuring myotonic dystrophy facts and MDF's mission of "Community, Care, & Cure". Get your myotonic dystrophy awareness swag now!
Wear Green & Celebrate Wherever You May Be!
Raising DM Awareness can be as easy as wearing green or sharing on social media! Show support by posting, sharing about your DM journey, and using the hashtags: #myotonicDystrophy and #rareDisease!
Follow MDF on Social Media so you can share the latest awareness content from our pages! You can amplify DM awareness by sharing about your journey with DM and tagging MDF!
Fundraise for Community, Care, and a Cure!
With your help, we can fuel our mission of Community, Care, and a Cure. Your DIY (Do It Yourself!) Fundraiser empowers our work to support the DM community, provide essential resources, and accelerate research toward treatments and a cure. Raise awareness and critical funds by starting your own fundraiser!
- Create a personalized page on MDF’s fundraising platform!
- Launch a Facebook fundraiser!
MDF is here to support your fundraising efforts with tips, ideas, and ready-to-use resources to help you succeed! Click here to download MDF's DIY Fundraising Guide!
Join the Global Alliance for Myotonic Dystrophy Awareness
Over 60 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.