NEWS

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

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.

LifeArc and DEBRA Austria launch £2.5m funding call for repurposing therapies for EB

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

Celebrating two years of support in Indonesia: a recap of DEBRA Indonesia's events

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

DEBRA South Africa takes part in Dermatology Nursing Workshop

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

Video highlights of DEBRA Ukraine's activities supporting its members during war time

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

DEBRA Spain works to ensure families receive the best possible level of care

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

US FDA gives its first approval for new treatment for dystrophic EB

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

DEBRA UK completes its largest ever EB patient insight study

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

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'

DEBRA International attends the 2023 EWMA Conference

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

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.

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.

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.

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.

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

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

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.

In memoriam: Catina Bernardis