NEWS

From appealing for greater healthcare professional presence and attending the paediatric palliative care conference to 31 family visits.

Krystal Biotech has received FDA approval for the first-ever redosable gene therapy, VYJUVEK™.

DEBRA UK completes EB patient insight study to better understand how EB impacts a patient's life and the type of care they receive.

The next EB Clinet Online Seminar is dedicated to the topic of 'Nutritional Needs and Anemia in Adults with EB'

DEBRA International attends the 2023 EWMA Conference

ERN Skin meeting held in Paris attended by DEBRA representatives from Ireland, Croatia, and Belgium

DEBRA Colombia was invited to attend the trade show with a stand to continue raising awareness of EB and care routes in Colombia.

An EB Expert Panel was launched by DEBRA Ireland to help shape their support and research priorities.

The free workshop was held over two days and aimed at healthcare professionals, the EB Community, patients, and families.

DEBRA UK has commissioned a specialist medical research agency to conduct a detailed EB patient insight study on their behalf.

We are delighted to share that Amryt Pharma received the EURORDIS company award for patient engagement at the Black Pearl Awards

It is with a heavy heart that we share the news that Lisa Brains, born with recessive dystrophic EB from Melbourne, Australia passed away

On 8th February 2023, DEBRA Ukraine received 200 kg worth of humanitarian aid for 60 EB patients living in the country.

In memoriam: Catina Bernardis

DEBRA Mexico's 1st EB Health Workshop. This workshop reflects the commitment of the global EB community to work together to promote health,

DEBRA Germany introduces a new video on EB wound care.

We are delighted to announce that the "Hand surgery and hand therapy clinical practice guideline for epidermolysis bullosa" has been...

We are delighted to announce the publication of the "Physiotherapy for epidermolysis bullosa: clinical practice guidelines" in the...

Sesión virtual para pacientes y familias dedicada al proyecto sobre EB de Rare Commons

Take the survey in English: https://survey.sfu.ac.at/EB2021/?q=E_Qnr Take the online survey in German: https://survey.sfu.ac.at/EB2021/?q...