NEWS

Jan 31

DEBRA groups hold COSEB workshop: working towards harmonization of outcomes in EB

The COSEB workshop was held by the COSEB Steering committee and DEBRA research managers of Austria, France, Ireland, Spain, and the UK.

Jan 10

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

Dec 21, 2023

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 20, 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 18, 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 15, 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.

Aug 21, 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 21, 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.

Jun 26, 2023

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.

Jun 26, 2023

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.

May 31, 2023

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.

May 18, 2023

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.

May 16, 2023

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 4, 2023

DEBRA International attends the 2023 EWMA Conference

May 3, 2023

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

Mar 10, 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.

Feb 15, 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

Jan 31, 2023

In memoriam: Catina Bernardis

Jan 30, 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 23, 2023

DEBRA Germany introduces a new video on EB wound care

DEBRA Germany introduces a new video on EB wound care.