Exciting announcement: Debra’s EB Butterfly Review is taking off

We are thrilled to unveil the EB Butterfly Review, a groundbreaking research initiative led by Debra in partnership with EY. This project will revolutionise care and support for people living with Epidermolysis Bullosa (EB) in Ireland and beyond.

💡 What is the EB Butterfly Review?
This comprehensive study will identify gaps, strengths, and challenges in EB care and provide actionable recommendations to improve support services. The aim is to create a more responsive, integrated healthcare system that addresses the needs of those living with EB.

This research will help Debra to:

• Identify and describe the current health care and community supports available to people with EB in Ireland.
• Highlight best practices in EB care from scientific studies worldwide.
• Understand the real-life experiences of people with EB and their families/carers as they navigate the healthcare system.
• Generate detailed recommendations, backed by evidence, to improve access and quality of care.
• Advocate for policy changes that will enhance the care of those impacted by EB in Ireland

🌍 A global impact:
While the review focuses on Ireland, its findings have the potential to inspire change globally, impacting over 500,000 people living with EB worldwide.

🎯 What’s next?
This research will serve as a roadmap for transforming EB care for years to come. We are calling on our community, funders, and partners to join us in driving this essential work forward. Your support will help us turn this vision into a reality, improving lives for years to come.



🔗 If you are a funder, you can learn more about how you can get involved and support this life-changing initiative

If you’d like to learn more, contact Louise Delahunty and Paddy Galsworthy from our team.