News, info, resources & informed opinion about Special Educational Needs, disability, mental health and children's health, especially rare conditions
Author: Rosie Collington, Genetic Alliance UK
I am a passionate believer in the need for patient voices at all levels of decision-making when it comes to health policy. As people living with rare diseases know only too well, healthcare is political, and so it is only right that patient groups are supported and are able to form part of our democracy. At Genetic Alliance UK / Rare Disease UK, I work on the APPG on Rare Diseases, edit the Rare Disease UK blog and manage the Rare Disease UK social media output.