NEWS

From April 5 to April 12, a photo exhibition focusing on epidermolysis bullosa (EB) was held at the Abashiri City Museum of Art in Hokkaido, Japan.

DEBRA International members joined global advocates at the Rare Women International Forum in Moscow, strengthening collaboration across the rare disease community.

The BUR-EB project has published a new collection of educational materials on EB, now available in Spanish, English, Italian, French, Hungarian, Bulgarian, and German.

Reintroducing DEBRA Greece, the “Greek Association of Epidermolysis Bullosa Patients and their Friends,” a non-profit organization dedicated to supporting individuals and families affected by EB in Greece.

The 2025 EB PSP JLA priority setting study led by DEBRA UK with global partners identified global EB research priorities and won the 2026 BOBI Award for innovation.

DEBRA International attended EWMA 2026 in Bremen, co-hosting a round table session on EB with DEBRA Germany, sharing clinical and lived experience.

With the publication of the congress supplement in einstein (São Paulo), the effort from EB Congress 2026 has now been captured in a lasting, accessible format.

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 attended No to Violence Against Women campaign, highlighting the importance of protecting and supporting women, especially girls and women with disabilities and those living with chronic and rare diseases such as Epidermolysis Bullosa (EB).

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.

DEBRA UK has recently launched a new EB CPD module authored by Dr Anna Martinez from the EB healthcare centre of excellence at Great Ormond Street Hospital in London with the objective to help raise awareness of EB with healthcare professionals (HCPs), particularly general practitioners (GPs).

DEBRA UK are committed to sharing what they’ve learned with other DEBRA organisations. If you’d like to know more or share your own experiences, on any holiday opportunities they’d love to connect! From how to purchase and manage holiday homes, to ensuring compliance and safety or delivering an exceptional member experience.

DEBRA Australia ambassador is walking from Melbourne to Adelaide for her EB Butterfly Walk challenge

DEBRA Italy has continued to strengthen its support for the EB community by developing a series of high-quality educational webinars providing valuable insights and expert perspectives.

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.

DEBRA Slovenia marked an important milestone of 20 years of existence with a regional symposium.

Explore the latest approved and emerging EB treatments, along with new wound-care innovations, in this expert-led DEBRA International webinar—now available to watch on demand.

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....

This grant is targeted at supporting representatives (patients, clinicians, researchers) who would otherwise not be able to attend and in turn, to benefit the local/regional EB-community.

Krystal Biotech’s Vyjuvek has been approved by Japan’s Ministry of Health, Labour and Welfare for the treatment of wounds caused by dystrophic epidermolysis bullosa (DEB). It is the first genetic therapy authorised in Japan for DEB.

UZ Leuven and NIHDI have signed a key convention, enabling tailored care plans and coordinated support for EB patients, a major step forward in rare disease care.