Deirdre and Eve are our family support team. They work as the link between the charity, the family and the medical team, co-ordinating and managing the Family Support Service and are 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 Workers 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 Children’s Hospital Ireland (CHI) and St James’ for advanced training in EB care
Should you feel the benefit of a home visit and a chat over a cup of tea in confidence:
Everyone living in Ireland living with EB or caring for someone with EB is welcome to access our family support service. Once you make contact with us we will send you out an intake form and a GDPR Form. As part of the intake form you will also be asked to submit confirmation of the type of EB you/ your family member is living with so we can allocate appropriate services. Once we have received your completed forms, a member of the family support team will be in touch.
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.
- Our next memorial service will take place in 2021 (Date to be confirmed)
- Should you or a family member need support after the loss of a loved one, please contact Deirdre on email@example.com or 01 4126924 / 086 1838864
EB Clinic Support
We are fully committed to support training for the clinical EB teams in both St. James Hospital for adults and Children’s Hospital Ireland (CHI), 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 Children’s Hospital Ireland 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 every year. The emphasis is very much on providing them with a day / weekend of fun activities and is also a chance for families to meet outside of the clinical setting. The support families can give each other lasts long after the event is over. Relationships are formed and connections are made for a lifetime. In 2019 we held one of our weekends in Barretstown and to say we all had a blast was an understatement.
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.
Every two years we take the time to come together and remember loved ones who are no longer with us. The last number of years we have been lucky enough to hold our memorial mass in the Butterfly Garden in Kilashee house. ( insert hyper link)This special occasion gives family and loved ones the opportunity to come together in remembrance of those we have lost. The next Mass is scheduled for 2021.
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.
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 CHI for the Hospitalisation grant.
Should you require any further information on the above please do not hesitate to contact our family support worker on 086 1838864 / firstname.lastname@example.org