24 July 2019

We are delighted that our patient focussed summer newsletter is now available to read.

In this special newsletter you will find out about the Network’s Patient Advisory Board, and their all-pervasive role throughout the Network. There are interviews with two of the board’s members, an article on new-born screening and an update from their recent meeting in Paris.

We would like to take this opportunity to thank everyone from the Patient Advisory Board who was involved in providing the content.