'We who have rare diseases, it's like we're invisible'

On International Rare Disease Day, Avril Daly, the Chair of the Genetic and Rare Disorders Organisation and Anne, whose husband has Huntington's Disease, joined George on High Noon.

'We are invisible.'

Today is International Rare Disease today, a day which calls for more to be done in relation to helping treat and cure those with rare conditions.

George was joined by Anne, the husband of a man who has had Huntington's Disease for the last 26 years, and Avril Daly, the Chair of the Genetic and Rare Disorders Organisation.

Ms Daly was unequivocal about the need for more to be done to help people, and their families, who suffer from rare diseases.

"We feel that we're invisible.  We're at the bottom of the pile when it comes to genetic services in Europe.  We should have 22 genetic counsellors in Ireland.  We have 6.  In Manchester, they have 24 genetic consultants, and they have 25 genetic counsellors."

"A person said to me, 'at least if we're on a trolley we can see a doctor.  You can see the white coats. We can't even see the white coats.'

Anne wants to see more done to support those that are in a similar situation to herself.  She described how her husband has deteriorated over the last number of years.

"Initially, we both worked and there were two incomes.  The thing is, Huntington's is slow.  It's very slow.  I used to notice he'd slow down, he'd start to forget things that were normal to him.  I'd often see him make a cup of tea, with a cup and the kettle, and he wouldn't be able to join the dots.  He wouldn't know why he was there."

"So initially we had two incomes.  Then we had one income.  Then I had to go part-time"

Listen to Anne's full story, as well as Avril Daly's comments in full, by clicking below.