NEWS

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

Read more about the new initiative dedicated to improving the lives of Persons Living with a Rare Disease (PLWRD) globally.

On February 4, 2025, RDI officially submitted the #Resolution4Rare for consideration by the World Health Assembly (WHA) Executive Board.

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

ESDR was held in Lisbon at the beginning of September. DEBRA Spain represented DEBRA International and held a talk about EB.

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.

The popular booklet 'What Is EB/Was Ist EB?' is now available in it's newest translation, German, and free to download.

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.

DI has received the EURODIS Member Award for the support of the rare disease community affected by conflicts and natural disasters.

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

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.

Association Epidermolysis Bullosa is a new Bulgarian patient organization, created in July 2023 by patients and parents of EB children