Online Charity & Non Profit Fundraising Services

Cause Description

Our mission is to give hope, hope of a life free of pain
and hope of a life where dreams come true for those living with EB.....


DEBRA Ireland is the national charity established by parents in 1988 to provide patient support services and to drive research into treatments and cures for those living with the genetic skin condition, epidermolysis bullosa (EB). People with EB, have skin that is as delicate and fragile as the wings of a butterfly and just as easily damaged.The condition is extremely painful and leads to disability and deformity. Many of our patients who survive childhood face the frightening reality that they could develop a very aggressive form of skin cancer, due to the constant breakdown of their skin. 


There is currently no cure or treatment for EB. Ultimately, the answers to the problems caused by EB will only be solved through research into the condition and into potential treatments. This is why DEBRA Ireland has long been focused on driving research into EB and why, over the years, we have provided over €2 million to fund world-class research projects. We strive to enable, encourage and facilitate EB research while also tackling the many barriers that can slow its progress. We work closely with other DEBRA organisations and researchers around the world as we firmly believe that a world-wide approach will be essential to the development of treatments and cures.

While DEBRA Ireland is striving to find effective treatments for EB, we are very aware that our EB patients have urgent and specialised requirements which are not being met by the State. We endeavor to meet these needs by providing support to families living with this devastating condition, through our Family Support Service. As part of this service our Family Support Worker travels the country meeting with our families and helping them to live as full a life as possible while dealing with the constraints of EB. For many years we also funded nurse specialists in the EB medical services in Our Lady’s Childrens Hospital in Crumlin and St. James’s Hospital and we hope to fund an outrearch nurse to support the families in their homes.

DEBRA Ireland receives no guaranteed State funding and so fundraising and donations are vital to allow us to continue to provide hope to our patients by funding research and support to them in dealing with the many challenges of EB.

Fundraisers

Events

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Contact Us

Contact Details

Butterfly Cottage 8 Clanwilliam Terrace , Grand Canal Quay, Dublin 2, Dublin, IRELAND

http://www.debraireland.org

https://twitter.com/https://twitter.com/debraireland