NEWS

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

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

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

The DEBRA France Association organized its 4th annual meeting of epidermolysis bullosa professionals at the Necker Hospital in Paris.

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

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

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.

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

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

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.

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

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

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

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

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

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.

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

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

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

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