NEWS

An Educational Day was organised for patients with EB and some Healthcare Specialists to highlight the importance of oral health in Jordan.

On Rare Disease Day 2025, DEBRA Egypt emphasize their commitment to managing around 400 cases of EB and offering essential medical support.

Butterfly Wings Organisation—DEBRA Jordan is the premier charity organisation in Jordan dedicated to supporting people with EB.

The DEBRA International Youth Council recall their visit to the fifth DEBRA Brazil Congress.

An update on the DEBRA International Youth Council (DIYC) attendance at the DEBRA Care Conference.

A summary of the JLA study results, along with a big thank you from DEBRA UK for your participation.

BUR-EB's new study aims to assess patients’ quality of life and the financial burden of EB on their families.

DEBRA Croatia marks Rare Disease Day with three new workshops for policy makers and students.

Introducing the DEBRA International Youth Council! Find out about their mission, their vision and meet their team.

ERN Skin held a Patient Education Program and Scientific Meeting for its members. 80 participants enrolled in the two day event.

DEBRA Piel de Mariposa campaign for new nurse successfully raised €26,004.

The 4th Debra Brasil Congress held in Belo Horizonte marked a significant milestone in the awareness and research of Epidermolysis Bullosa.

DEBRA International wins the EURORDIS 2024 Members Award at the Black Pearl Awards

The DEBRA International Youth Council: update about what they’ve been up to and what they will focus their efforts on in 2024

The COSEB workshop was held by the COSEB Steering committee and DEBRA research managers of Austria, France, Ireland, Spain, and the UK.

On Tuesday 12th December 2023, the DEBRA International's inaugural Roundtable of Companies held the first in-person group meeting in London.

In 2023, DEBRA Austria/ EB Resnet launched a £2.5M funded joint call with partners LifeArc for research proposals targeting repurposing...

The DEBRA France Association organized its 4th annual meeting of epidermolysis bullosa professionals at the Necker Hospital in Paris.

DEBRA UK held a reception with Scottish Parliament as the latest step in their campaign to raise awareness & the need for government support

Contracts for two new research projects have been successfully issued by EB Resnet 2022.