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 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.

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.

Mini DEBRA Romania launched a new initiative offering tailored psychotherapy to improve the mental health and wellbeing of individuals and families with EB.

Voices for Change united Jordan’s EB community to raise awareness, share experiences, and advocate for better care and support.

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 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.