As you know General Election 2020 is fast approaching.
We at DEBRA Ireland are working hard to make our future politicians #ebaware.
Will you help us to help EB families?
When your local candidates come looking for your vote ask them one simple question
EB (epidermolysis bullosa) is a rare, genetic condition, in which the skin and internal body linings blister at the slightest touch, causing painful, open wounds. In severe forms it is debilitating, life-limiting and devastating.
EB services are struggling to address the needs of patients. We desperately need the Children’s Hospital Ireland group to take over funding of the EB Outreach nurse.
What will you do to help us achieve this?
Families living with EB have to cope with 3 hour agonising dressing changes without any nursing support.
What could you or your party do to help?
Dressings and bandages are not considered drugs & therefore not directly available on either the medical card or Drugs Payment Scheme.
Is this a fair way for society to treat some of its most vulnerable?
As members of the Disability Federation of Ireland, DEBRA Ireland is fully supportive of their General Election manifesto 2020.
In it they urge politicians to make the rights of people with disabilities a priority.
Paste this line into the existing commitments requested by DFI and follow the instructions
Support sustainable nursing care & care packages for people living with EB.