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).