The First World Congress on Rare Skin Diseases took place in Paris at the beginning of June 2022. The Congress was organised by the European Reference Network (ERN) for Skin and the Rare Skin Diseases Network of the Fondation René Torraine. Medical teams, scientists, patient representatives, policy makers and industry came together under one roof for three days.

This blog post was co-authored by Mary Bailey.

Prof Liam Grover and his research team at the University of Birmingham are currently developing a spray that will be used to treat oral scarring, mouth ulcerations and internal blistering in EB.

This blog post was co-authored by Seamus Graham.

Dr Yanling Liao and her research team, at New York Medical College in the USA, are aiming to understand immunity and fibrosis better, specifically in Recessive Dystrophic EB (RDEB).

Krystal Biotech has developed a gene therapy, called VYJUVEK, which is designed for use in patients with Dystrophic EB (DEB) to heal chronic wounds.

This blog post was co-authored by Alison Hyland.

Researchers in the University Hospital of Cologne, Germany, are currently trying to gain a better understanding of the complications of wound healing in those who have Recessive Dystrophic EB.

The annual DEBRA International Congress took place last week from Thursday 16th until Sunday 19th September 2021. The event was hosted by DEBRA Russia, and although attendees could not be in Moscow in person this year, the charity ensured that the learning experience was as engaging as possible with a stellar line-up of 40 EB experts speaking in a 3D virtual environment. 

This blog post was co-authored by Mary Bailey, an EB family member.

Clinical trials are how scientists test new methods to diagnose, treat, cure, and prevent health conditions, including rare health conditions such as EB. Clinical trials are a lengthy process usually, as the goal is to ensure this new method is both safe and effective before use.

DEBRA Ireland is a member of the Health Research Charities Ireland group (HRCI). One of the aims of HRCI is to support charities in Ireland to fund healthcare research to assist them in improving the lives of those they support.