Deirdre Callis is our Family Support Worker. Deirdre works as the link between the charity, the family and the medical team, co-ordinates and manages the Family Support Service and is exclusively committed to the support and care of all those affected by EB.
- Visiting EB patients at home means we are focused on the needs of the individual and their own EB journey
- Our Family Support Worker makes around 100 home visits per year sharing knowledge from family to family and offering advice around health entitlements
- Our EB patients and their carers can apply to DEBRA Ireland for respite grants and specialised equipment
- We provide funding to EB medical teams at Crumlin Children’s Hospital and St James’ for advanced training in EB care
Peer 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 lobby of The Clayton Hotel, Cardiff Lane, Dublin.
- If you are interested in coming along to our next EB Support Group please drop Deirdre an email email@example.com or text 087 2903084 for further details.
- Again all are welcome!
Every year we remember those families that have sadly lost a loved one. Our hope is that we create a space for families to remember their loved ones.
- St. Teresa Church, Clarendon Street, Dublin 2 is the church we are linked with for this Offertory Mass and is scheduled every autumn. The full details to follow.
- Should you or a family member need support after the loss of a loved one, please contact Deirdre firstname.lastname@example.org or 01 4126924
EB Clinic Support
We are fully committed to support training for the clinical EB teams in both St. James Hospital for adults and Our Lady’s Children’s Hospital for Children in Crumlin, in order to help ensure that our patient families are provided with the best clinical care possible. We also support training for other professionals who work within the EB community, either within the hospital setting or as designated private healthcare providers. All requests for training are accepted and reviewed by our Family Support Worker.
DEBRA Ireland also offers financial support to both paediatric and adult clinics, through the provision of specialised equipment, as it is needed, ensuring our EB clinics are operating as centres of excellence. We also provide light refreshments to the families when they are attending the EB clinics in OLCHC in order to make slightly easier what can often be a long, tedious and, sometimes, traumatic day.
We organise a number of get togethers for all our families. The emphasis is very much on providing them with a day of fun activities and is also a chance for families to meet with the staff of DEBRA Ireland and discuss any issues they might be having.
Previous events include our Christmas Party in The Clayton Hotel in Dublin where families got to meet Robert Sheehan and were treated to presents from Santa.
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. You can also apply online with the form below.
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 application request is dealt with in confidence and may be subject to medical recommendation and the availability of funds. Application forms are available for downloading. You can also apply online with the form below.
A grant of €120 per week is available for hospitalisation expenses and transport costs incurred during stays of 2 nights or more for EB treatment.
If you live outside Dublin a grant of €150 per week is available to allow for extra transport costs.
All of the above grants are available to residents in the Republic of Ireland and are subject to approval and available funding.
The family support worker requires receipts in order to process the Respite Grant, recommendation from the hospital or other professionals for the Special Needs Grant and confirmation of admission and discharge dates from St James Hospital or Our Lady’s Crumlin for the Hospitalisation grant.
Should you require any further information on the above please do not hesitate to contact our family support worker on 087-2903084 / email@example.com