NEWS

EB was brought to the heart of European decision-making during a dedicated event at the European Parliament for Rare Disease Day 2026.

DEBRA Egypt organised an art workshop on caricature drawing as part of its ongoing activities to support Epidermolysis Bullosa (EB) patients psychologically and socially, and to help develop their skills.

DEBRA Spain held its first ever EB Nurses Conference, bringing together more than 80 healthcare professionals from across Spain.

For Rare Disease Day 2026, Debra Ireland is running a national advocacy campaign focused on a very practical issue affecting people living with EB: access to disability parking.

Dr Ritu Jain, President of DEBRA International, featured in RARE Revolution Magazine discussing rare disease diagnosis and equitable global care.

EB Congress 2026 in São Paulo united 520 participants from 35+ countries, highlighting DEBRA International sessions, lived experiences, research, and global collaboration in EB care.

In April 2025, EB advocates from all over the world came to Prague to participate in the GlobalSkin conference. We sat with them and listened to their story....

DEBRA International joined the 15th WCPD in Buenos Aires to raise EB awareness, share resources, and connect with global dermatology professionals and partners.

The Yasmin El Samra Foundation - DEBRA Egypt share a letter of thanks and appreciation for the Ramadan celebration, now in its 27th year

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.