Today I delivered a talk for International Rare Disease Day at the Irish event in Dublin. I was speaking about my rare disease Mucopolysaccharide Morquio Disease and the life saving enhancing drug Vimizim, which I recently started.
I spoke a little about my background and living with this disease and why I felt it was important that I and others with Morquio get Vimizim approved in the UK and Ireland. I also spoke how I did this, with others in the UK. And I also spoke about how Ireland is yet to approve Vimizim in the south of Ireland and how young girls, like Grace Cogan in Monaghan, are still trying to get access to this treatment.
To watch the speech in full, press play on the video below: