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Contact us 

If you have a question that we have not answered to your satisfaction on our information page or if you want to give us any feedback, you can contact us directly - preferably by sending us an e-mail to the following address:

If the question you are contacting us about concerns a particular patient, please provide the full name and date of birth of the patient.

You can also contact us by telephone on the following number: 

   0191 241 8640


Steering Committee

The Global FKRP Registry Steering Committee is composed of seven neuromuscular specialists, a patient representative, plus one representative each from LGMD2i Research Fund and Cure LGMD2i. The Steering Committee is responsible for reviewing all requests for data from the Global FKRP Registry.

List of Steering Committee members

Registry team

The Global FKRP Registry is operated by the John Walton Muscular Dystrophy Research Centre, Newcastle University, United Kingdom.

List of Registry Team members