DEBRA Ireland's mission is to fund the development of treatments and cures for all forms of Epidermolysis Bullosa, and meanwhile to do all in its power to alleviate the suffering caused by EB.
Donate now

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.

EB Forum

  • We have recently launched an online EB Forum for those who live with EB within Ireland. We hold regular online live chats for families and friends.  This in an invaluable resource which brings the wider EB family closer to one another to share their experiences and to offer advice.  If you haven’t done so already you can register on our forum page.
  • Our chats will take place on the first Monday of every month at 8.30pm – 9.30pm. Also note you can use this forum to leave a comment or suggestion and should you need an answer, we will do our very best to replying to you within 24 hours.
  • Please see the Support Calendar below to see the date of the next on- line chat.

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 Drury Court Hotel, Drury street, Dublin 2.  Drury Court is centrally located with a car park directly adjacent to the Hotel or a 5 minute walk to a bus or luas. 
  • Again all are welcome!

Bereavement Support Group

  • This is a new group being set up in 2010 to assist families in accessing support when they have lost a loved one from an EB related illness. It is a rolling group, which means you can drop in / out as your needs dictate.
  • The support that families can give to each other when they loose a loved one is most invaluable and can often be the crutch needed when you feel there is no sense in life or place to turn, or just to chat.
  • The people in this group will all know and share a personal sense of what you are going through. Whether you have lost a loved one recently or 20 years ago, you are most welcome! Collectively we will all make a difference and that’s what counts.
  • The location of the support group is based in the DEBRA Ireland, La Touche House, 1 Grove Road, Rathmines, D6. We will meet from 8pm- 9.30pm.
  • Please see the Support Calendar to see the date of the first Bereavement Support Group.  

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”

© 2010 DEBRA Ireland | Privacy Policy | Contact Us