Our Family Support Manager works directly with our families, offering support and assistance for challenges faced on a daily basis. This service is delivered in the community (north and south of the border) and is shaped by family needs. We strive to make this happen through home visits and being available to families by email, telephone and by partnering with other professional agencies including the HSE, private health care providers and community support services. In 2017 we increased resources to our Family Support Service, secured major funding for our EB Outreach Nurse and increased our respite grants.
EB Outreach Nurse
We welcome back our EB Nurse from maternity leave. Her role, which is based in Our Lady’s Children’s Hospital Crumlin (OLCHC), is a vital extension of the nursing support offered to families both in St James’ Hospital and OLCHC. She will be out in the community and will work in close harmony with our existing Family Support Services, bringing additional care.
We are in the process of producing a suite of information booklets for new parents explaining everything from the different types of EB, to genetics, to having a new baby with EB. We hope these booklets bring some clarity to parents when coming to terms with a new diagnosis of EB.
Online Resource Point
We have developed and designed an online resource point county by county for families which allows families to access support and services in their county simply by a click of a mouse.
Our memorial service will be on Sunday 27th August in the beautiful setting of the Butterfly Garden in Killashee House, Kildare. It is a very special event for families that have been bereaved and is one we hold very dear.