DEBRA Ireland is the national charity that provides patient support services to those families affected by, or living with EB in Ireland.(EB) Epidermolysis Bullosa is a severe rare genetic skin blistering condition.
Since the start of your support this year you are making life changing differences to our families today and every day:
Family Support DEBRA Ireland has a family support worker who travels around Ireland visiting families and offering support in every sense – emotional, practical and financial (helping families apply for grants and administering grants DEBRA Ireland provides). 5 babies were born with EB in the last year.
As you can imagine, the first months of life with EB are filled with shock and grief so we are very grateful to be able to supply that ‘spare battery’ to our new families.
EB Nurse DEBRA Ireland have now hired an EB nurse. This new role is an incredible result for DEBRA Ireland and the final piece in the community care puzzle. This role will allow EB patients to access a seamless nursing service, leaving no gap between home and hospital.
Judith Gilsenan, Head of Fundraising