Emery-Dreifuss Muscular Dystrophy

(EDMD, Hauptmann-Thanheuser MD)

MDA leads the search for treatments and therapies for Emery-Dreifuss muscular dystrophy (EDMD). The Association also provides comprehensive supports and expert clinical care for those living with EDMD.

In this section, you’ll find up-to-date information about Emery-Dreifuss muscular dystrophy, as well as many helpful resources. This information has been compiled with input from researchers, physicians and people affected by the disease.

As you learn more about EDMD, always remember that you’re not alone. MDA is here for you and your family, standing ready to provide help and hope. There is a place for you in the MDA EDMD community.

MDA provides support by:

Once you sign up with your local MDA office, you’ll begin receiving MDA’s quarterly Quest magazine, where you’ll find news about research and health care, helpful products and devices, social and family issues, and more.

In addition, MDA will keep you informed through e-alerts, educational publications and speakers, seminars, videos and newsletters.

Please know that there’s a role for you in the fight against Emery-Dreifuss muscular dystrophy. The MDA community is strong and dedicated, with opportunities for involvement at all levels, such as:

  • connecting with others affected by EDMD;
  • being an advocate;
  • enrolling in disease registries and clinical trials;
  • participating in community awareness and fundraising events;
  • and much more.

Please know that there’s an important role for every member of the EDMD community. We urge you to contact your local MDA office to learn more.

An EDMD diagnosis doesn’t mean an end to your hopes and dreams. Changes, challenges and adaptations lay ahead, but also opportunity, fulfillment, joy and hope for a future free of Emery-Dreifuss muscular dystrophy. 

Never forget that MDA is here to help.