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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:

January 2022

October 2018

June 2016

November 2014

July 2014

December 2013

April 2013

April 2012


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.

We also have a postcard available in English: Global FKRP Registry Postcard

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