NEWS

Jan 31

Youth Council: To infinity and beyond

The DEBRA International Youth Council: update about what they’ve been up to and what they will focus their efforts on in 2024

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 16

DEBRA International wins EURODIS member award

DI has received the EURODIS Member Award for the support of the rare disease community affected by conflicts and natural disasters.

Dec 21, 2023

DEBRA International Roundtable of Companies first in-person group meeting

On Tuesday 12th December 2023, the DEBRA International's inaugural Roundtable of Companies held the first in-person group meeting in London.

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 18, 2023

DEBRA UK goes to Scottish Parliament

DEBRA UK held a reception with Scottish Parliament as the latest step in their campaign to raise awareness & the need for government support

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.

Dec 14, 2023

New EB patient organization in Bulgaria

Association Epidermolysis Bullosa is a new Bulgarian patient organization, created in July 2023 by patients and parents of EB children

Aug 22, 2023

DEBRA Colombia's 29th Patient Gathering Event

The DEBRA Colombia Foundation held a note-worthy Patient Gathering Event in Bogota from May 5th to 7th for patients with EB

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.

Aug 1, 2023

DEBRA International and GlobalSkin Symposium

The event gave clinical, research, and industry updates on EB, successful collaborations with DEBRA, and building impactful patient groups.

Jul 14, 2023

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.

Jun 27, 2023

DEBRA France hosts its annual meeting of families in Paris

On April 1st, DEBRA France hosted its annual meeting in Paris. 30 families came together for the first time since the COVID-19 pandemic.

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

Charity run funds raised for DEBRA Germany

DEBRA Germany was one of four charitable causes that received funds raised from a charity run held on June 17th by the Lions Club Bidenkopf.

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.

Jun 26, 2023

Funds raised for DEBRA Colombia through the HEELP Program

Heel Colombia has set forward a plan to rewrite the future with the purpose of transforming lives through different projects.