NEWS

Sep 25

DIYC at the DEBRA Care Conference in Atlanta

An update on the DEBRA International Youth Council (DIYC) attendance at the DEBRA Care Conference.

Sep 13

JLA study: A giant global thank you from DEBRA UK

A summary of the JLA study results, along with a big thank you from DEBRA UK for your participation.

Jul 15

Take part in new BUR-EB project to improve EB care in Europe

BUR-EB's new study aims to assess patients’ quality of life and the financial burden of EB on their families.

Mar 25

DEBRA Croatia marks Rare Disease Day 2024

DEBRA Croatia marks Rare Disease Day with three new workshops for policy makers and students.

Mar 6

DEBRA International Youth Council

Introducing the DEBRA International Youth Council! Find out about their mission, their vision and meet their team.

Feb 28

DEBRA groups attend ERN Skin's Patient Education Program and Scientific Meeting

ERN Skin held a Patient Education Program and Scientific Meeting for its members. 80 participants enrolled in the two day event.

Feb 28

Successful DEBRA Piel de Mariposa campaign for a new EB nurse

DEBRA Piel de Mariposa campaign for new nurse successfully raised €26,004.

Feb 28

Debra Brasil 2023 Congress

The 4th Debra Brasil Congress held in Belo Horizonte marked a significant milestone in the awareness and research of Epidermolysis Bullosa.

Feb 21

DEBRA International celebrates EURORDIS 2024 Members Award win at the Black Pearl Awards

DEBRA International wins the EURORDIS 2024 Members Award at the Black Pearl Awards

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.

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 18, 2023

LifeArc and DEBRA Austria's £2.5m funding call update

In 2023, DEBRA Austria/ EB Resnet launched a £2.5M funded joint call with partners LifeArc for research proposals targeting repurposing...

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 23, 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 22, 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 22, 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.