Log In or Register to Join The Conversation!
Viewing 1 reply thread
  • Author
    Posts
    • #16522

      Are you part of a national registry for your specific type of MD? I believe in the Facioscapulohumeral Muscular Dystrophy Patients and Family Members Registry. I fill out yearly forms and up to date on new findings and research.

      Do you have a rare form of MD but are not part of a national or international registry? I like the registry because I look back and see how much my body has changed and maybe find a specific connection to things about my MD.

    • #16531
      Tracy Myall
      Participant

      I’m not sure if there is a national registry for Myofibrillar myopathy. I know it’s rare and I never see articles or information about it posted on the site. It’s kind of frustrating to have a type of MD that you can’t find any information on. All I get is from my neurologist. I guess I could ask him if there is a national registry. It would be nice to be able to get more information.

Viewing 1 reply thread
  • You must be logged in to reply to this topic.
Copyright © 2017-2021 All rights reserved.

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account