If you have a question that we have not answered to your satisfaction on our information pages or if you want to give us any feedback, you can contact the Registry Coordinator directly by sending an e-mail to the following address:
If the question you are contacting us about concerns a particular patient, please give us the full name and date of birth of the patient.
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
The Global FKRP Registry is operated by the John Walton Muscular Dystrophy Research Centre, Newcastle University, United Kingdom.