NEWS

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.

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

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

The DEBRA International Youth Council recall their visit to the fifth DEBRA Brazil Congress.

An update on the DEBRA International Youth Council (DIYC) attendance at the DEBRA Care Conference.

A summary of the JLA study results, along with a big thank you from DEBRA UK for your participation.

BUR-EB's new study aims to assess patients’ quality of life and the financial burden of EB on their families.

DEBRA Croatia marks Rare Disease Day with three new workshops for policy makers and students.

Introducing the DEBRA International Youth Council! Find out about their mission, their vision and meet their team.