News

Registry Statistics

Registry statistics will be published here when they are available

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Registry Newsletters

Registry newsletters will be published here when they are available

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

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Relevant press releases

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Resources on other websites

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Patient organisations and support groups

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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).

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Blogs and social media

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Registry materials

Patient information sheets for UK participants:

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Acknowledgements

We would like to acknowledge Ingrid Verhaart (Leiden University Medical Centre) for her help with translation of the registry to Dutch.