Joanne O'Riordan from Millstreet says we need to think about all parts of society, from education to employment to culture.
She's one of the "changemakers" promoting the 'I Am Number 17' campaign, which aims to raise awareness about what it's like to live with a rare condition.
Joanne lives with Total Amelia - meaning she was born without limbs - and she's calling for action on accessibility
"We can divide into the public access in terms of your ramps and the buildings and all that as well as, you know, the social access. Not only is it going to take the Minister for Disabilities, it's going to take all government departments to make sure that people with rare diseases can access all these things equally and that ranges from education, employment, sport, culture, theatre, whatever that person wants to do that they have equal access to it"
