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Thursday, 26 October 2023
Debra - The Butterfly Skin Charity that assists patients with the chronic skin condition Epidermolysis Bullosa 'EB' is calling on the Government to provide more funding to patients, following Budget 2024, where they received no additional funding for the second year in a row.
The charity estimates the costs of caring for someone who has Epidermolysis Bullosa (EB) at more than €130,000 per year.
A Kemmy Business School University of Limerick commissioned report suggests Ireland compares poorly to other countries where families receive better support.
The research conducted by Dr. Darragh Flannery and Dr. Brian Downes found that in Ireland, challenges remain in the provision of home nursing care, such as the lack of a contingency plan when nursing staff are unavailable - and to address a lack of EB-trained nurses to replace those who move on.
Research found that the quality of life of those with EB is "profoundly negative" and many adults face challenges around employment prospects, relation.
Links to media reports below:
TV
https://www.rte.ie/news/2023/1024/1412712-epidermolysis-bullosa-skin-condition/
https://x.com/VirginMediaNews/status/1717187729274933357?s=20
Papers
https://www.thesun.ie/health/11540609/rare-condition-epidermolysis-bullosa-shock-costs-fury-debra/
https://x.com/darraghflanner1/status/1717141327798804801?s=20
https://x.com/debraireland/status/1716824116827963459?s=20
https://x.com/debraireland/status/1717134245573828987?s=20
Email: business@ul.ie
Postal Address: Faculty Office, Kemmy Business School, University of Limerick, Limerick, Ireland.
