Started co-hosting rare disease day events on all island basis: 2013- City Hall, Dublin; 2014- Riddel Hall, Belfast.
Member of UK rare disease forum
Started contributing to medical education for 1st and 5th year students at QUB.worked with RCGP on the development of the “What I need you to know” patient passport.
Launch of “Living everyday with rare disease survey”- a baseline for further work.