The first EB World Congress took place in London last month. 600 delegates from over 50 countries attended the sold out event. It was a great opportunity to share global knowledge on EB research and management and align strategies to find cures and treatments to help the 500,000 EB sufferers and their families around the world manage pain and improve their lives.

The Congress consisted of talks on the current state of play in research (from understanding the biology of the condition, early to late stage research), clinical care and patient engagement. There were also side fora that could be attended in parallel.

Question time on the main stage – Day 1


Day 1 – Research Day 2 – Research
· Current dilemmas – Complexity of EB · Cell manipulations & therapies
· The challenges of EB skin · Gene manipulation & therapies
· Inflammation, fibrosis & therapeutics · Clinical trials and research programmes
· Cancer & cancer therapeutics · Living with EB
· Natural history – implications for clinical trial design · Current dilemmas – Measurement & research
EB experts Professors Johann Bauer (Paracelus Medical University), Leena Bruckner-Tuderman (University of Freiburg) and John McGrath (King’s College London) kick off the Congress on Day 1


Day 3 – EB-Clinet Day 4 – EB Community
· Current dilemmas – Funding challenges · A global approach to EB
· Update on clinical management strategies      · Updates in EB research
· Clinical & management case histories · Current dilemma – Patients in clinical trials
· Quality of life (pain & itch) · Living with EB
· Support models · Updates in EB clinical care
· Strategies for care · EB Community open forum
DEBRA Ireland CEO Jimmy Fearon presenting DEBRA International – co-ordination and collaboration on the final day of the conference

Side Fora

There were many side forums, training and meetings. Some included:

  • Current CPGs in development including Transition in EB, Pregnancy, childbirth and aftercare in EB, Palliative care in EB.
  • DEBRA groups from around the world also got together to share ideas in areas such as marketing and communication, community and family support, fundraising, advocacy and lobbying.

Ireland’s contribution

It was fantastic to see a huge presence from Ireland at the Congress. There were representatives from every aspect of the EB community – people living with EB, the clinical team, researchers, DEBRA staff, and industry.

During the meeting Godfrey Fletcher, CEO of National and International Skin Registries Solutions (NISR), based in UCD in Dublin, gave two talks on the progress of the Irish and international EB patient registries and on the importance of registry data. He used the example of the success of the cystic fibrosis registry over the last 15 years to explain the importance of registries. We also distributed flyers and information booklets to delegates explaining the International EB Registry and how to get involved.

Suzi O’Neill (EB Outreach Nurse), Rosemarie Watson (DEBRA Trustee & prev. EB Clinical Lead), Sharon Keogh (EB Clinical Nurse Specialist, OLHC) and Annmarie Ormonde (EB Clinical Nurse Specialist, SJH)

Members of the Irish clinical team, Dr Fiona Browne, Dr Rosemarie Watson, Suzi O’Neill, Annmarie Ormonde, Sharon Keogh and Christine O’Rourke attended the congress and participated in various fora.

Researchers Dr Irene Lara-Sáez and Dr Jonathan O’Keeffe-Ahern from UCD Charles Institute of Dermatology attended the congress and presented a poster on Riboplex: the gene editing nanoparticle to treat RDEB.

Amryt Pharma, a Dublin based orphan drug company, was among the many biotech companies in attendance doing great work on the development of new therapies for EB. It presented updates on the development of its two EB therapies AP101 and AP103.

Dr Sinéad Hickey, Research Manager and Jimmy Fearon, CEO of DEBRA Ireland

The first EB World Congress was a great success in bringing the global EB community together in its fight against EB. Everyone left the meeting with plenty more work to do and serious motivation to keep them driving research for effective therapies that will have a life-changing impact on those living with EB around the world.