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Newsletters and Leaflets


You will be provided with regular updates from the Registry in the form of a newsletter, which will be sent to you annually by e-mail. Previous versions can be found here:

Issue 7

Issue 6

Issue 5

Issue 4

Issue 3

Issue 2

Issue 1


Information leaflets have been produced to help explain what the Global FKRP Registry is about and how to register. When more languages become available they will be added here.

If you are a doctor and would like paper copies of the leaflets sent to you then please contact the Registry team.