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Joint announcement DEBRA UK and Action Medical Research partnering to fund research into effective treatments for children’s EBS

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Charities Action Medical Research for children and DEBRA UK are pleased to announce that they have agreed a new partnership to support research into finding effective treatments that could promote wound healing for children living with epidermolysis bullosa simplex (EBS).

EBS is the dominant type of EB, a rare, genetic skin blistering condition which causes the skin to become very fragile and tear or blister at the slightest touch. Currently there is no cure, however new therapies for modifying disease severity have the potential to provide major benefits and improve quality of life for children and families suffering from this rare disease.

The new partnership will see Action Medical Research and DEBRA jointly fund £199,751 over three years to a research project specifically focused on epigenetic gene regulation in EBS.

This important new research study aims to build upon previous progress made by the researchers in recent laboratory studies which have looked at the makeup of the skin’s DNA in children with EBS to understand if correcting mutations in the structure of the skin cells could lead to significant improvements in terms of wound healing and blister resolution.

The research will be led by Professor John Connelly, PhD and conducted by teams based at the Centre for Cell Biology and Cutaneous Research and the School of Engineering and Materials Science, Queen Mary University of London.       

Commenting on this important new research study, DEBRA CEO Tony Bynre said: "We were delighted to be approached by such an esteemed organisation as Action Medical Research for Children, who have an enviable track record of funding vital research to help sick and disabled babies, children and young people. We look forward to working with them and the research team at Queen Mary University of London over the next three years to get a step closer to having treatments to alleviate some of the symptoms for children living with EBS."

Action Medical Research for Children Chief Executive Julie Buckler said “Funding research into rare diseases, such as epidermolysis bullosa simplex (EBS), is important and we are delighted to be partnering with DEBRA UK to work towards developing a new treatment to help improve the lives of children, and their families, living with EBS.”


DEBRA is the national charity and patient support organisation for people living with the incredibly painful skin blistering condition, epidermolysis bullosa (EB), often referred to as ‘butterfly skin due to the skin being as fragile as a butterfly’s wing. DEBRA provides care and support for people living with EB and invests in research to find effective treatments and cures for EB.

About Action Medical Research for Children

Action Medical Research is the leading UK-wide charity dedicated to saving and changing children’s lives through medical research. For over 70 years we’ve helped pioneer ways to prevent disease and develop treatments benefiting millions of people. Our research has helped to beat polio in the UK, develop ultrasound in pregnancy, fight meningitis and prevent stillbirths. But we urgently need to develop more new treatments and cures for sick babies and children and we can’t do it without you.

Join our fight for little lives today. Charity reg. nos 208701 and SC039284.

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