NEWS

EB Clinet Online Seminar: Nutritional Needs & Anemia in Adults with EB

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

May 16, 2023

DEBRA International attends the 2023 EWMA Conference

May 4, 2023

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

May 3, 2023

DEBRA Colombia attends the 33rd National Congress of Dermatology

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

Mar 14, 2023

DEBRA Ireland launches an EB Expert Panel to help shape its support and research priorities

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

Mar 10, 2023

First health workshop "Salud sin Fronteras" ("Health without Borders") held in Mexico

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

Mar 1, 2023

DEBRA UK commissions EB patient insight study

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

Feb 24, 2023

Congratulations to Amryt Pharma - recipients of a EURORDIS Black Pearl Award!

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

Feb 21, 2023

In memoriam: Lisa Brains

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

Feb 15, 2023

New shipment of humanitarian aid arrives in Ukraine

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

Feb 8, 2023

In memoriam: Catina Bernardis

Jan 31, 2023

DEBRA Mexico's 1st EB Health Workshop

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

Jan 30, 2023

DEBRA Germany introduces a new video on EB wound care

DEBRA Germany introduces a new video on EB wound care.

Jan 23, 2023

NEW! Hand surgery and hand therapy CPG for EB now published

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

Nov 14, 2022

NEW! Physiotherapy for EB: clinical practice guidelines

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

Oct 7, 2021

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

May 20, 2021

Take part in an international research study on burden and resources in EB - online survey

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...

May 7, 2021

Únete a Rare Commons para compartir tus experiencias y ayudar a mejorar el conocimiento de la EB

Rare Commons es un proyecto de investigación del Hospital Sant Joan de Déu de Barcelona que se centra en el estudio biomédico de las...

Apr 22, 2021

People with EB in Brazil have the opportunity to access genetic sequencing tests free of charge

With 28th February 2021 marking Rare Disease Day, DEBRA Brasil and Illumina have joined forces to launch a pioneering and high impact...

Mar 13, 2021

Meet the team behind the creation of the supporting sexuality for people with EB CPG

Every CPG published is the result of 18-24 months of hard work and dedication by a volunteer panel of clinical and patient experts.

Jan 14, 2021