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.
You can also get in touch with one of our National Contacts. This is someone from your own country of residence and/or speaks the same language as you that will be able to answer any questions you may have.
The Global FKRP Registry Steering Committee is composed of four neuromuscular specialists, a patient representative, plus one representative each from Cure CMD and the LGMD2I Research Fund. The Steering Committee is responsible for reviewing all requests for data from the Global FKRP Registry.
The Global FKRP Registry is operated by the Friedrich-Baur-Institut, Klinikum der Universität München (University of Munich hospital).