Deirdre, Eve and Kate 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:

Deirdre can be contacted on: [email protected] / [email protected] or call 086 183 8864
Eve can be contacted on: [email protected] /[email protected] or call 087 290 3084

Who do we support?

We support people:

• living with all forms of EB
• who care for a person living with EB
• who have a family member or partner living with EB
• who have lost a loved one to EB
• living with EB in the Republic of Ireland and Northern Ireland

How do you get support?

If you would like to avail of our Family Support Services such as home visits, DEBRA Grants, peer events and many other supports, you will need to complete our online Registration and Data Consent form. If you would like a postal copy of the form please email the family support team.

As part of the registration process, you will also be asked to submit a letter from your EB Clinic/GP confirming the type of EB you or your family member is living with. This is so we can allocate appropriate services. Once we have received your completed form, a member of the family support team will be in touch.

To register for family support, please click HERE.

Bereavement Support

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 September 2023 (Date to be confirmed)
• Should you or a family member need support after the loss of a loved one, please contact Deirdre on [email protected] or 01 4126924  / 086 1838864

Memorial Mass

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 Killashee house. This special occasion gives family and loved ones the opportunity to come together in remembrance of those we have lost. The next memorial service is scheduled for September 2023.

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.

 

Peer Events

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.

 

Grant Assistance

Respite and Wellness Grant:

Living with EB can sometimes take over and leave little time for you and your well-being. Every year, we offer all our DEBRA households our annual Respite & Wellness Grant to give each home the opportunity to get that all-important breathing space. This grant can go towards a holiday, a great day out or any recreational activity that may improve your well-being and your family’s well-being.

For more information on this grant, please click HERE.

Special Circumstances Grant:

Special circumstances grants are provided to rectify or address an immediate problem for a family or individual affected by EB following an assessment by a medical professional or the DEBRA Ireland family support team. Each application request is dealt with in confidence and may be subject to medical recommendation and the availability of funds.

To apply for this grant, please click HERE.

Counselling Grant:

We provide compassionate care and support, but we understand that living with EB can bring significant emotional and social challenges, and that professional counselling can be hugely helpful for some. If you would like to access this type of support, we can provide you with funding to engage in counselling or therapy.

As EB not only affects those diagnosed with the condition, we offer our counselling fund to all members of the family.

Please note: Your chosen counsellor or therapist must be fully accredited with one of the accreditation bodies below. This is to ensure that we are funding the appropriate care for you or your family member.

Approved accreditation bodies:

• Irish Association for Counselling and Psychotherapy (IACP)
• Irish Association of Humanistic and Integrative Psychotherapy (IAHIP)
• The Psychological Society of Ireland (PSI)
• Irish Association for Play Therapy and Psychotherapy (IAPTP)
• Play Therapy Ireland (PTIrl)

In order for us to be able to process this grant, we require the following from you:

• Name of therapist/counsellor or centre
• Accreditation number of therapist/counsellor
• Accreditation body

To apply for this grant, please click HERE.

Hospitalisation Grant:

A grant of €100 per week is available for hospitalisation expenses incurred during stays of 2 nights or more for EB treatment. If you would like to avail of this grant, please contact the family support team directly for further information.

 

All of the above grants are only available to residents in the Republic of Ireland who have been affected by EB.  Approval of grants are subject receipt of relevant supporting documentation and available funding.

Should you require any further information on the above please do not hesitate to contact our family support administrator Kate on 086 068 4722 / [email protected]