NEWS

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

Butterfly Summer 2024 was a week-long rehabilitation and educational retreat for those affected EB in Poland and Ukraine.

The World Health Assembly will meet in May 2025 to adopt a groundbreaking resolution to prioritize skin health as a global health issue.

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

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

DEBRA International held two sessions and a booth at the 2024 EWMA in London.

During the visit, Belgian Minister made an important announcement for better care for patients suffering with four types of rare diseases.

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

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

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

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.

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.

The group has held several online and in-person events to cater for its EB patient and healthcare communities in the archipelagic country.

DEBRA Germany was one of four charitable causes that received funds raised from a charity run held on June 17th by the Lions Club Bidenkopf.

The nurses were educated on EB and how to take care of babies' wounds with the resources available to them in their respective centres.

Heel Colombia has set forward a plan to rewrite the future with the purpose of transforming lives through different projects.

The objective of the foundation is to encourage EB patients interested in drawing and learning crafts.