We are delighted to report that a DEBRA Ireland supported study, taking an in-depth look at EB support services in Ireland, has been published.  One of the strengths of this study is that it incorporates the perspectives of those delivering services and as well as those receiving them. In this way it took a very inclusive approach in considering the experiences, views and hopes of everyone involved.

The findings of the study revealed five priorities for future EB support services. In condensed form, these include the need to provide:

• free access to medical treatment and dressings, as a basic human right.
• access to specialist EB support staff, within both hospital and community settings.
• appropriate time within the health system, for health professionals to understand the challenges of living with EB, build therapeutic relationships and prioritise treatment.
• education, training and the potential for involvement in EB research, for all involved in support services.
• increased awareness about living with EB and the support services required, within all levels of the healthcare system and beyond.

This study was led by Dr. Rosie Gowran of the University of Limerick. Rosie and her team engaged with many people living with EB and those involved in delivering EB support services and we would like to thank everyone who gave their time to this valuable research. The outcomes are extremely useful in our on-going efforts to understand the strengths and weaknesses of the current system and in guiding all involved in EB support services in their plans for the future.

See here for a summary of the project and please get in touch with me if you would like a copy of the full published paper – [email protected]