Story telling for rare disease health

The theme for the Rare Disease Day on 29 February, 2016 is 'Patient Voice’.

Emma Rooney, who is a patient ambassador, who recently joined our new PAG, has compiled a list of patient stories from all different corners of the world about a multitude of rare conditions.

This is through the Canadian My Normal Project, which a few days ago also launched their Social Media Rare Toolkit with Global Genes. If you have stories yourself or any suggestions for stories, you can contact Emma via the channels listed on the website.

We will also include this great list of patient stories in our Resources in English section on the website.