NEWS

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

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.

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.

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

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

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.

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

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

UK and international applications are invited from 1st February – 31st March 2024 for DEBRA UK project grant and small grant award...

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

Two DEBRA reps were recipients of the Patient Leader Awards honoring leadership of GlobalSkin members at local, regional, and global levels.

It proved a wonderful opportunity for various DEBRA/EB delegates to connect, strategise, and discuss priorities for their communities.

From appealing for greater healthcare professional presence and attending the paediatric palliative care conference to 31 family visits.

ERN Skin meeting held in Paris attended by DEBRA representatives from Ireland, Croatia, and Belgium