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MDF Family Registry

Myotonic Dystrophy News

September 15,2025

Join us at a 2026 MDF Regional Conference!

MDF is bringing our Conference to a city near YOU in 2026! Individuals with DM of all types and ages, their families, and experts will all gather at these one-day conferences to explore the latest research, discuss strategies for better living, and to end isolation through community.

September 15,2025

Global Alliance of 60+ Myotonic Dystrophy Organizations Recognizes 5th Annual International Myotonic Dystrophy Awareness Day, September 15, 2025

The Global Alliance proudly marks the fifth annual International Myotonic Dystrophy Awareness Day, bringing together over 60 organizations from 17 countries across five continents in a unified effort to raise awareness, promote research, and advocate for improved care for individuals and families affected by myotonic dystrophy.

August 22,2025

Empowering the Future: RNA Day Celebrates Innovation, Education, and Hope for the DM Community

The RNA Institute at the University at Albany’s College of Arts and Sciences hosted its annual “RNA Day” celebration on Friday, August 2nd. This day brought exciting news and celebrations for myotonic dystrophy (DM) research!

August 22,2025

Celebrate Myotonic Dystrophy In Motion Awareness Month 2025 – Movement Matters this July

This July, MDF is thrilled to host the 2025 Myotonic Dystrophy In Motion Awareness Month—a month-long celebration centered around the theme: Movement Matters.

July 23,2025

Could Myotonic Dystrophy Be Included in Newborn Screening? Experts Say It’s Time to Explore

On February 14, 2025, the RNA Institute and the Myotonic Dystrophy Foundation (MDF) organized and co-hosted the first ever symposium exploring how to include myotonic dystrophy (DM) in newborn screening. Conditions included in newborn screening are also diseases that do not have treatments but benefit from early disease management thereby significantly improving clinical outcomes.

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.