NEWS

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.