NEWS

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.

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 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.

It highlights management priorities in neonatal EB care and provide clinicians access to recommended treatment and preventative care options