Together, we’ve shined a spotlight on the desperate struggle many people living with EB face to get care and support.
We called loudly and clearly for investment to improve it.
It’s disappointing, but it doesn’t mean our voices have been ignored. Both Sinn Féin and the Social Democrats included investment in EB in their alternative budgets, which shows the progress we’ve made in drawing political attention to the issue.
We sent our open letter to the Minister for Health, Stephen Donnelly, signed by over 2,800 of our wonderful supporters. A huge thank you to everyone who added their name, and to our incredible advocates Emma Fogarty and Liz Collins for leading our #InvestinEB campaign.
Many children and adults living with epidermolysis bullosa (EB) are making every effort to get access to support they desperately need such as reliable and flexible home nursing care, specialist advice and mental health support. Together, we’ve shined a spotlight on the desperate struggle many people living with EB face to get care and support – and called loudly and clearly for investment to improve it.
We will continue to meet with decision-makers, keep people with EB at the centre of our discussions and push for the investment we know is so badly needed.