NEWS

On February 28, 2025, the EMA has recommended granting a marketing authorisation in the European Union for Vyjuvek to treat DEB.

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

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

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

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.

As 2024 draws to a close, DEBRA International reflects on a year of remarkable achievements and progress its support to those affected by EB

On Thursday, 28th November 2024, the second annual meeting of DEBRA International's Roundtable of Companies took place in Dublin, Ireland.

DEBRA Spain/Piel de Mariposa hosted its annual National Meeting, from October 3 to 6 in Estepona (Málaga).

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.

A new clinical trial is looking for 74 patients with severe forms of EB in renowned study centers across the world.

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

Rare Diseases International announced the results of the recent RDI Council elections, with DI president Ritu Jain elected as Secretary.

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

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

The official report on the 1st MENA Region and African International EB Congress, which took place in Cairo, Egypt on 25th - 28th April 2024

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.

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.