Registry Newsletters

Other registries and projects which you may be eligible to participate in

Relevant press releases

Resources on other websites

  • Information on obtaining an alert card from Muscular Dystrophy UK- alert emergency health care professionals of the specific issues which are relevant to care.
  • Tips on safe data sharing: Are you protecting your personal data and being a ‘smart’ research participant? (from the Myotubular and Centronuclear Myopathy Patient Registry)
  • What is genetic testing? (From NHS UK) - A video summary of the role of genetic testing. Specific to cancer, but applicable to all genetic conditions.
  • MDUK Research Line: A helpline run by MDUK which can help you better understand the latest research into your condition.

Patient organisations and support groups

Other support

  • Advocacy Ambassadors: Patients in the UK can contact MDUK if they are interested in being put in touch with an Advocacy Ambassador.  Advocacy Ambassadors are all affected- directly or indirectly- by a muscle -wasting condition.  They all have knowledge of navigating social and health services.
  • Advocacy and Information Officers: patients in the UK can have access to their local Advocacy and Information Officer who can help with access to services (disability welfare benefits, housing, housing adaptions, education, care packages and wheelchairs).

Blogs and social media