Inherited and Endocrine Myopathies

MDA leads the search for treatments and therapies for inherited and endocrine myopathies. The Association also provides comprehensive supports and expert clinical care for those living with inherited and endocrine myopathies.

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

Here you will find information about six types of inherited myopathies (myopathies that can be passed from parent to child):

Here you also can find information on two noninherited myopathies caused by abnormal activity of the thyroid gland:

As you learn more about inherited and endocrine myopathies, 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 inherited and endocrine myopathy community.

MDA provides support by:

  • funding inherited and endocrine myopathy research projects around the world;
  • providing expert health care at 200 MDA clinics nationwide;
  • providing timely, regular information about research progress through Quest News Online;
  • providing practical support, such as help locating and repairing durable medical equipment;
  • advocating for increased funding for inherited and endocrine myopathy research and accelerating research progress through partnerships with federal agencies and policymakers;
  • helping individuals, families and caregivers connect with other members of the inherited and endocrine myopathy community through support groups and online social networks such as Facebook and Twitter;
  • helping you mobilize a personal support network through the care coordination tool myMuscleTeam; and
  • connecting you with community and educational resources.

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 inherited and endocrine myopathies. The MDA community is strong and dedicated, with opportunities for involvement at all levels, such as:

  • connecting with others affected by inherited and endocrine myopathies;
  • 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 inherited and endocrine myopathy community. We urge you to contact your local MDA office to learn more.

An inherited or endocrine myopathy 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 inherited and endocrine myopathies.

Never forget that MDA is here to help.