NEWS

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.

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.

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....

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.

This is an essential tool for health professionals, highlighting management priorities in the care of oesophageal strictures in inherited epidermolysis bullosa (EB) and provide clinicians access to recommended diagnostic, treatment, and preventative care options.

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

EB DEBRA Bulgaria is new a patient-led organisation and member of DEBRA International dedicated to supporting those affected by EB through access to therapies, advocacy, and collaboration across healthcare, government, and industry.

The FDA has approved ZEVASKYN™ (prademagene zamikeracel), the third therapy available for individuals with epidermolysis bullosa (EB)

DEBRA International are pleased to share a new collection of DEBRA International Zoom backgrounds, free for all to use.

DEBRA International, represented by DEBRA Spain, raised EB awareness and fostered global partnerships at EWMA 2025 in Barcelona through talks and collaboration.

On February 28, 2025, the EMA has recommended granting a marketing authorisation in the European Union for Vyjuvek to treat DEB.

Butterfly Wings Organisation—DEBRA Jordan is the premier charity organisation in Jordan dedicated to supporting people with EB.

The World Health Assembly will meet in May 2025 to adopt a groundbreaking resolution to prioritize skin health as a global health issue.

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.