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NEWS


Rare Disease Day 2026: Epidermolysis Bullosa at the Heart of the European Parliament
EB was brought to the heart of European decision-making during a dedicated event at the European Parliament for Rare Disease Day 2026.
Feb 26


DEBRA Spain Hosts its First EB National Nurses Conference
DEBRA Spain held its first ever EB Nurses Conference, bringing together more than 80 healthcare professionals from across Spain.
Feb 24


Boosting Early Diagnosis of EB: New DEBRA UK CPD Module
DEBRA UK has recently launched a new EB CPD module authored by Dr Anna Martinez from the EB healthcare centre of excellence at Great Ormond Street Hospital in London with the objective to help raise awareness of EB with healthcare professionals (HCPs), particularly general practitioners (GPs).
Feb 24


Webinar Now Available to Watch: Latest Advances in EB Treatments and Wound Care
Explore the latest approved and emerging EB treatments, along with new wound-care innovations, in this expert-led DEBRA International webinar—now available to watch on demand.
Dec 17, 2025


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, 2025


NEW! Management of Oesophageal Strictures in Inherited EB: a Clinical Practice Guideline now published
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.
Jun 5, 2025


Abeona Therapeutics Inc receives FDA approval for ZEVASKYN™ cell-based gene therapy
The FDA has approved ZEVASKYN™ (prademagene zamikeracel), the third therapy available for individuals with epidermolysis bullosa (EB)
Apr 29, 2025


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, 2025


Take part: RHEACELL phase 3 clinical trial on systemic stem cell therapy for wound healing in RDEB/JEB
A new clinical trial is looking for 74 patients with severe forms of EB in renowned study centers across the world.
Sep 20, 2024


DEBRA International attends the 2024 EWMA Conference
DEBRA International held two sessions and a booth at the 2024 EWMA in London.
Jul 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


Belgian Minister visits the EB-clinic at the University Hospital of Leuven
During the visit, Belgian Minister made an important announcement for better care for patients suffering with four types of rare diseases.
Jun 19, 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


NEW! Neonatal Care in EB: a Clinical Practice Guideline now published
It highlights management priorities in neonatal EB care and provide clinicians access to recommended treatment and preventative care options
Jan 10, 2024


Last call to get patients involved in the GRIDD study
The online survey takes 10-20 minutes to complete and is open only until December 31, 2023.
Dec 21, 2023


Chiesi Global Rare Diseases receives FDA approval for FILSUVEZ® topical gel for the treatment of EB
FILSUVEZ topical gel is indicated for the treatment of partial thickness wounds in patients 6 months and older with Junctional and...
Dec 20, 2023


DEBRA France holds 4th annual EB professionals meeting in Paris
The DEBRA France Association organized its 4th annual meeting of epidermolysis bullosa professionals at the Necker Hospital in Paris.
Dec 18, 2023


New international research projects from DEBRA Austria and EB Resnet
Contracts for two new research projects have been successfully issued by EB Resnet 2022.
Dec 15, 2023


Building smiles and empowering Butterfly Children- research and webinar on oral health and QoL
DEBRA Indonesia hosted a free webinar to increase awareness and knowledge of oral and dental health for EB patients
Aug 22, 2023


DEBRA Spain's work in funding research, international collaboration, and EB healthcare
DEBRA Spain are delighted to announce they will be dedicating €100,000 to a research project to develop a topical gel to treat RDEB wounds.
Aug 22, 2023
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