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.

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.

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 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.

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

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.

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.

Graeme Souness completed a 22-hour swim for DEBRA UK, raising £730,000 to support vital research and raise awareness for the painful skin condition EB.

Debra Italia’s EB Day at Dynamo Academy brought the EB community together for two days of connection, learning, and support in Tuscany.

DEBRA France marked 40 years with families, workshops, awards, and a zoo visit, celebrating decades of support and community in the fight against EB.

Women of Egypt recognized DEBRA Egypt founder Hanaa El Sadat with the Women of Impact Award for her life-changing work supporting children with the rare skin condition EB.

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.

DEBRA Egypt was proudly presented with an award-winning EB advocacy poster, and held a keynote presentation at the MENA Congress for Rare Diseases

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