Health Entitlements

With the help of Senator Colm Burke, we recently obtained a meeting with Patrick Burke, the director of the HSE division that deals with medical cards and other health entitlements. We informed Mr. Burke and his senior staff, of the difficulties experienced by families living with EB, in accessing their entitlements Continue reading

Meeting with Minister

As part of our advocacy campaign to improve the care of Irish families living with EB, we met with the Minister for Health, Dr James Reilly in May. The Minister was very sympathetic to the difficulties experienced by families and was particularly interested to hear from our Family Ambassador, Liz Collins, on what life is like as the parent of a child with EB.  Continue reading