For the second year in a row, we are asking the Government to prioritise EB care.
By investing €810,000 in mental health support, outreach care, and home care for people living with EB, we can make an immediate, positive impact for the approximately 300 people living with EB in Ireland.
We are asking the Minister for Health to meet with us to learn how this small ask can have a big impact.
Over 100 people across Ireland have supported our call for investment by sending written messages that we have now turned into a book in support of Debra, while 1,800 of you have sent messages to the Minister for Health online through Twitter and Facebook. A huge thanks to everyone who has supported our campaign by taking this action.
Together we can shine a spotlight on the desperate struggle many people living with EB face to get care and support and showcase how such a small action can have a big impact.
The investment we are asking for is far less than 1% of the 2023 health budget, which was €23.4 billion.
Based on the average of people living with EB in Ireland (300), the investment we are seeking would cost €7.40 per person a day, less than the price of two cups of coffee.
Aoife, living with EB simplex
We are asking the Government to provide funding towards a clinical psychologist at a cost of €80,000 per annum and develop a clear pathway to access specialist mental health supports in the community.
We are asking the Government to fund an EB care coordinator to support people in the community at a cost of €75,000 per annum.
We are also asking the Government to fund an EB outreach nurse to support adults living with EB at a cost of €75,000 per annum.
Many people living with EB are struggling to access vital services and supports, with people often having to fight relentlessly to get what they need. We are calling on Government to invest in additional acute and community supports that will meet the unique needs of people living with or caring for someone with EB.