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.

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

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 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 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 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 24, 2023

Empowering girls in Egypt

The objective of the foundation is to encourage EB patients interested in drawing and learning crafts.

Jun 22, 2023

Prizes awarded to DEBRA representatives at GlobalSkin Conference 2023 ELEVATE

Two DEBRA reps were recipients of the Patient Leader Awards honoring leadership of GlobalSkin members at local, regional, and global levels.

Jun 22, 2023

DEBRA International attends GlobalSkin Conference 2023 ELEVATE

It proved a wonderful opportunity for various DEBRA/EB delegates to connect, strategise, and discuss priorities for their communities.

Jun 13, 2023

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.

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 27, 2023

DEBRA Egypt holds arts and crafts lessons for girls with EB that helps raise funds for those with EB

With the help of volunteers, the Foundation has started the arts and crafts lessons of candle making with the girls for the past two months.

May 27, 2023

DEBRA Australia's 'Butterfly Breaks'

DEBRA Australia is thrilled to offer the 'Butterfly Breaks' program, providing much-needed respite for individuals, couples, and families.

May 24, 2023

DEBRA Italia and Fondazione Reb celebrate charity concert 'MUSIC AGAINST DIFFERENCES'

May 23, 2023

DEBRA Germany hosts EB families weekend

DEBRA Germany had a wonderful weekend with a group of EB families in Schmallenberg/ Sauerland.

May 23, 2023

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™.