The support we provide

Along with our goal to drive research for treatments and cures for EB, an equally vital aim is to offer support to those living with EB. We at DEBRA Ireland are only too familiar with the extra layers of support required when living with or caring for a family member affected by EB. Our aim is to help identify and remove obstacles that may be preventing individuals from engaging in life to their full potential. We look at the needs of each individual and from that work with the individual in making their life more comfortable and some of their dreams and ambitions a reality.

Family Support Worker

Ms. Deirdre Callis is our family support worker. Deirdre works as the link between the charity, the family and the medical team. Deirdre is exclusively committed to the support and care of all those affected by EB and to tailoring the resources of DEBRA Ireland towards the best way of helping the individual. Deirdre works closely with the individual and family in a manner that is comfortable and shaped by each family.

Deirdre’s role involves assisting individuals and families in accessing appropriate social and healthcare services.

Deirdre provides practical and emotional support to individuals and families who live with EB nationwide.

Deirdre provides support for families who have experienced bereavement from an EB related illness.

Should you feel the benefit of a home visit and a chat over a cup of tea in confidence, then Deirdre can be contacted on: deirdre@debraireland.org / info@debraireland.org or call 087 2903084

EB Support Group

The EB Support Group has been set up to assist individuals and families affected by EB in sharing their experiences, their knowledge and to support one another.

The support group is comprised of family members who wish to access support in a very informal nature. We meet from 8.00pm – 10.00 pm over a coffee / drink.

We meet in the bar/ lobby of The Hilton Hotel, Charlemount Place, Dublin 2. There is ample on-street parking along the canal plus hotel underground parking and it is also located 5 min walk from the Red Luas Line.

Again all are welcome!

If you are intrested in coming along to our next EB Support Group scheduled for December 2012, please email deirdre@debraireland.org for further details.

Bereavement Support Group

Every year we remember those families that have sadly lost a loved one. We do this in one of two ways. A memorial mass is organized where families are invited to attend an intimate mass to celebrate their loved ones or secondly to have a mass offered in memory of all families who have been bereaved. Our hope is that we create a space for families to remember their loved ones.

The next date for our offertory Mass is 28th October 2012. The 11am mass is being offered to all families that have been bereaved. The church is St. Teresa Church, Clarendon Street, Dublin 2.

All are welcome.

Should you or a family member need support after the lose of a loved one, please contact deirdre@debraireland.orgor 01 4126924

Grants

Respite grants are available for the individual / family to help them avail of a much need break and / or holiday. Application forms are available for downloading and are allocated on an annual basis. Application forms are available for downloading, click here.

General grants are provided in cases when a particular piece of equipment or service will facilitate the family member or individual to enjoy a better quality of life. Such grants are only given if funds are not available from any other service provider. Each applications request is dealt with in confidence and maybe subject to medical recommendation and the availability of funds. Application forms are available for downloading, click here.

Medical Support

DEBRA Ireland recognizes the vital importance of medical care that delivers consistency and excellence and thus provides funding towards the cost of the EB Liaison Nurse Service at Our Lady's Hospital for Sick Children and the EB Service at St James's Hospital.

We have part funded the EB Nurse Specialist post in OLHCH since 1998

We provide funding for training as needs dictate to the medical teams in both the adult clinic and paediatric clinic to ensure both teams are kept abreast of medical advance and wound management.

Recognising the importance of medical and recreational equipment we continue to ensure that both clinics have top of the range equipment.

We have recently redecorated the Butterfly Clinic at OLHSC to ensure that the clinic is a child friendly environment and that the children can play safely whist waiting for their medical appointments during what can be a long and stressful day.

“Our mission is to give you hope, hope of a life free of pain and hope of a life where dreams come true”