NEWS

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.

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 are pleased to share a new collection of DEBRA International Zoom backgrounds, free for all to use.

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.

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

Read more about the new initiative dedicated to improving the lives of Persons Living with a Rare Disease (PLWRD) globally.

On February 4, 2025, RDI officially submitted the #Resolution4Rare for consideration by the World Health Assembly (WHA) Executive Board.

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

ESDR was held in Lisbon at the beginning of September. DEBRA Spain represented DEBRA International and held a talk about EB.

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.