Rare Disease UK. 2016 report. "The Rare Reality"

 "The Rare Reality"

 

The Genetic Alliance UK group published its 2016 report into patient experiences dealing with rare disorders. Kallmann syndrome was a featured condition in the report and one of the four patient videos.

Rare Disease UK is a Eurodis funded organisation that aims to bring together patients with rare disorders into one organisation to give them a single voice to help raise public awareness and help to lobby government for political change to help patients and families.