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.

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.

The FDA has approved ZEVASKYN™ (prademagene zamikeracel), the third therapy available for individuals with epidermolysis bullosa (EB)

An Educational Day was organised for patients with EB and some Healthcare Specialists to highlight the importance of oral health in Jordan.

A new clinical trial is looking for 74 patients with severe forms of EB in renowned study centers across the world.

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

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

During the visit, Belgian Minister made an important announcement for better care for patients suffering with four types of rare diseases.

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

It highlights management priorities in neonatal EB care and provide clinicians access to recommended treatment and preventative care options

The online survey takes 10-20 minutes to complete and is open only until December 31, 2023.

FILSUVEZ topical gel is indicated for the treatment of partial thickness wounds in patients 6 months and older with Junctional and...

The DEBRA France Association organized its 4th annual meeting of epidermolysis bullosa professionals at the Necker Hospital in Paris.

Contracts for two new research projects have been successfully issued by EB Resnet 2022.

DEBRA Indonesia hosted a free webinar to increase awareness and knowledge of oral and dental health for EB patients

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.

This Special call will seek innovative proposals to develop therapeutics for severe unmet needs that can be brought rapidly to EB patients.

The group has held several online and in-person events to cater for its EB patient and healthcare communities in the archipelagic country.

The nurses were educated on EB and how to take care of babies' wounds with the resources available to them in their respective centres.

The video demonstrates the sterling work by the group to support its members and EB patient community in times of extreme adversity.