NEWS

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.

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.

DEBRA International joined GlobalSkin’s 10th anniversary in Prague, where 300+ advocates united under the theme “Champion” to connect and share experiences.

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

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.

The Yasmin El Samra Foundation - DEBRA Egypt share a letter of thanks and appreciation for the Ramadan celebration, now in its 27th year

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

An Educational Day was organised for patients with EB and some Healthcare Specialists to highlight the importance of oral health in Jordan.

On Rare Disease Day 2025, DEBRA Egypt emphasize their commitment to managing around 400 cases of EB and offering essential medical support.

Butterfly Summer 2024 was a week-long rehabilitation and educational retreat for those affected EB in Poland and Ukraine.

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