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On 12th October 2024, the EB community came together at The Grand Canal Hotel in Dublin for its EB Expert Panel Workshop. This gathering marked a significant step forward in our shared mission to improve the lives of those living with EB. It was a day filled with powerful conversations, insightful presentations, and a collective drive to bring about real change.
Presenting the Butterfly Review: A path towards better care
A key highlight of the workshop was the presentation of the EB Butterfly Review, a comprehensive evaluation of current EB care practices, research priorities, and patient needs. The review, named to symbolise the fragility and strength of those living with EB, provided a clear and candid look at where we are today and where we need to go.
This was an emotional moment for everyone involved — from medical professionals to patient advocates — as it brought into focus the urgent need for improved care strategies, faster access to treatments, and a greater understanding of the daily challenges faced by people with EB and their families.
Key outcomes”
1. Strengthening person-centric research: The Butterfly Review highlighted the need for research that truly reflects the lived experiences of those with EB. The workshop fostered new collaborations between researchers, clinicians, and patient advocates, aimed at ensuring that future studies are directly aligned with patient needs.
2. Improving quality of life: Discussions underscored the importance of holistic care approaches, including enhanced pain management, mental health support, and advanced wound care. The panel explored innovative ways to deliver better day-to-day support for families affected by EB.
3. Mobilising resources for clinical Trials: The workshop acknowledged the financial challenges of conducting clinical trials for rare conditions like EB. A new action plan was put forward to prioritise and fund promising research projects, accelerating the journey towards effective treatments.
4. Increasing access to knowledge and training: One of the review’s findings was the gap in clinical education on EB. The panel committed to developing comprehensive training resources to help healthcare professionals better understand and manage this complex condition.
A call to the EB community: Your voice matters
This workshop was just the beginning, and the success of the Butterfly Review depends on hearing directly from those at the heart of our mission — people living with EB, those caring for someone with EB, and families who have lost loved ones to this condition.
We warmly invite you to join our panel and share your experiences, insights, and hopes for the future. Your voice will be instrumental in shaping the next steps of the Butterfly Review, helping us create a roadmap for change that truly meets the needs of our community.
If you or someone you know is living with EB, caring for someone with EB, or has been bereaved by EB, we encourage you to get involved. Join our panel and help us build a better future for everyone affected by this devastating condition.
Together, we can bring hope, amplify voices, and drive forward the change that our EB community so urgently needs.
