Events are taking place to raise awareness around rare diseases in Ireland today.
The event will bring together medical experts and people living with rare diseases to highlight their challenges.
Angel Wall from Waterford has a rare disease, Neuro-fibro-mitosis type 2 (NF2).
She spoke to WLR about her experience, "It affects approximately one in twenty-five to one in thirty thousand people worldwide. I'm not exactly sure how many people in Ireland it affects, but I know in the clinic I go to, they have 25 adult patients with NF2.
"I received a clinical diagnosis in 2018, but I didn't meet with anyone about genetics until January 2022. That whole time, the only genetic understanding I had was from my research. I was lucky enough to have a more-than-average understanding thanks to what I was studying in college.
"We want to make people aware of the struggles faced by people living with rare diseases in Ireland. We want to get the elected representatives involved, to push the government and deliver on the promises that they have made to improve the services at the CHI in Crumlin, which is where the genetic services are available for us in Ireland.
"At the moment, they are working with half of the staff required for the services that people need."
More information about the event can be found on the Rare Disease Ireland website.
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