Sign our open letter to the Minister for Health

Many children and adults living with epidermolysis bullosa (EB)* are struggling to get access to support they desperately need such as reliable and flexible home nursing care, specialist advice and mental health support.

Ahead of the Budget announcement later this year, we’re calling on the Government to invest in improving services and expanding support for people living with EB and their families.

Will you add your name to our open letter to the Minister for Health, Stephen Donnelly, asking him to set aside €941,000 in the Budget to make sure people living with EB get the care and support they urgently need?

Budget decisions are being made now, so we need to act fast. The Government will be announcing the 2023 Budget in October, and is reviewing submissions over the summer.

Invest just under €1 million in home care, outreach care and mental health supports for children and adults with EB.

7 Names. Add your name now! ⇒

From time to time we would like to send you updates on our work and let you know about other ways you can help, including fundraising events. If you are happy to hear from us by email please tick Yes. If you already receive emails from us and wish to continue getting them please tick Yes.*

EB is a rare genetic condition that makes a person’s skin so fragile that even gentle contact can cause blistering and open wounds. Children and adults with more severe forms of EB wear bandages across most of their bodies to protect the skin and prevent infection. These bandages must be managed daily, with most people requiring a full bandage change at home at least three times each week.

Our Ask: Invest just under €1 million in home care, outreach care and mental health supports for children and adults with EB.

Create a ring-fenced fund of almost €800,000 for home nursing care for children and adults with severe EB to ensure they have access to secure and flexible care packages that adapt as their needs change over time.

Fund an EB Outreach Nurse to support adults living with EB. This role is an essential link between the hospital and community, supporting infection assessment at home and providing expert advice to families.

Increase the mental health supports available to children and adults living with EB and their families, including funding towards a clinical psychologist dedicated to supporting adults with EB.