On 27th June a group of people affected by EB gathered outside Leinster House to call on the Government to invest €810,000 in mental health support, home nursing care and outreach care for people with EB.
Our Patient Ambassador Emma Fogarty was there, and she called on the Minister for Health, Stephen Donnelly, to meet with us.
“I’ve spent years fighting this, fighting the nursing system, fighting the Government, fighting to get a wheelchair pass.
“It’s hard enough to fight EB — you shouldn’t have to fight everything else as well.
“That’s why we’re fighting this. The system is extremely fragile. It’s very easy to break and it does. ‘Our motto this year is small ask, big impact’,” said Emma.
So far, over 15,000 people have already engaged with our campaign on Twitter, with over 700 of you tweeting the Minister for Health asking him to invest in EB services and supports.
Thank you so much to everyone who has supported our campaign by taking this action.
Budget decisions are being made now, so we need to act fast. The Government will be announcing the 2024 Budget in October and is reviewing submissions over the summer.
If you haven’t already, please will you join us in asking the Minister for Health to meet with us?
Together, we’re making it loud and clear to the Government that they must invest in EB care in the upcoming Budget.