Our family support service continues to offer emotional, practical and financial support to families living with EB. We are the link between the hospital and the community and tailor our resources to each family’s needs. We work with other agencies including the HSE in order to ensure families living with EB have access to as much support as possible.  This service is at the heart of everything we do.

 

  1. Outreach Nurse

Our community outreach nurse, Suzie O’Neill acts as an extension of the current service offered by the EB nursing team and whilst she is based out of Crumlin Hospital, this year will see Suzi become more involved in support within the community. Suzi can be contacted on 0861409585 or suzanne.o’neill@olchc.ie

  1. Expansion of our Family Support Service

Due to the increase of families accessing our service, we are now in a position to expand our family support service. This will mean more home visits and support from our family support workers Deirdre and Eve available to families five days a week.

  1. Respite Grants

EB places a huge financial burden on families. All families can apply for financial help and avail of a number of grants under our family support service. Our respite and well-being grants are a major part of our financial support for EB families. These grants allow our families to enjoy a modest holiday or other relief in their lives. You can’t underestimate the importance of this valuable ‘time-out’ and extraordinary benefits families gain from it.

4. Family Weekend in Barretstown
This year we are very excited to be holding our second family weekend in Barretstown, Co Kildare on 24 -25 November 2018. This is a wonderful opportunity for children with EB to meet and have fun together.