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NEWS


UZ Leuven is officially becoming the reference hospital for coordinating care for all people with Epidermolysis Bullosa (EB) in Belgium
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.
Jul 3


Graeme Souness completes epic swim challenge for DEBRA UK
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.
Jun 12


Hope and Healing: wellbeing and mental health support for families in Romania
Mini DEBRA Romania launched a new initiative offering tailored psychotherapy to improve the mental health and wellbeing of individuals and families with EB.
Jun 5


Voices for Change: DEBRA Jordan hosts Awareness Day
Voices for Change united Jordan’s EB community to raise awareness, share experiences, and advocate for better care and support.
Jun 5


EB day at Dynamo Academy – a special gathering in Italy
Debra Italia’s EB Day at Dynamo Academy brought the EB community together for two days of connection, learning, and support in Tuscany.
May 22


DEBRA France celebrates 40 year anniversary
DEBRA France marked 40 years with families, workshops, awards, and a zoo visit, celebrating decades of support and community in the fight against EB.
May 22


Women of Egypt honor Hanaa El Sadat with Women of Impact Award
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.
May 22


New EB patient organisation in Bulgaria
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.
May 21


Yasmin El Samra Foundation honored at MENA Congress for Rare Diseases
DEBRA Egypt was proudly presented with an award-winning EB advocacy poster, and held a keynote presentation at the MENA Congress for Rare Diseases
May 1


New DEBRA International Zoom Backgrounds Available Now – Download for Free!
DEBRA International are pleased to share a new collection of DEBRA International Zoom backgrounds, free for all to use.
Apr 23


DEBRA Jordan's Educational Day for Patients with EB on the Importance of Oral & Dental Healthcare
An Educational Day was organised for patients with EB and some Healthcare Specialists to highlight the importance of oral health in Jordan.
Feb 27


DEBRA Egypt celebrate Rare Disease Day 2025
On Rare Disease Day 2025, DEBRA Egypt emphasize their commitment to managing around 400 cases of EB and offering essential medical support.
Feb 27


DIYC attend fifth DEBRA Brazil Congress
The DEBRA International Youth Council recall their visit to the fifth DEBRA Brazil Congress.
Feb 12


New RDI-Lancet Commission on Rare Diseases aims to drive global impact
Read more about the new initiative dedicated to improving the lives of Persons Living with a Rare Disease (PLWRD) globally.
Feb 11


A landmark moment for the WHA Resolution on rare diseases
On February 4, 2025, RDI officially submitted the #Resolution4Rare for consideration by the World Health Assembly (WHA) Executive Board.
Feb 11


DIYC at the DEBRA Care Conference in Atlanta
An update on the DEBRA International Youth Council (DIYC) attendance at the DEBRA Care Conference.
Sep 25, 2024


The European Society for Dermatological Research (ESDR) Review
ESDR was held in Lisbon at the beginning of September. DEBRA Spain represented DEBRA International and held a talk about EB.
Sep 25, 2024


Take part in new BUR-EB project to improve EB care in Europe
BUR-EB's new study aims to assess patients’ quality of life and the financial burden of EB on their families.
Jul 15, 2024


DEBRA Croatia marks Rare Disease Day 2024
DEBRA Croatia marks Rare Disease Day with three new workshops for policy makers and students.
Mar 25, 2024


DEBRA International Youth Council
Introducing the DEBRA International Youth Council! Find out about their mission, their vision and meet their team.
Mar 6, 2024
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