NEWS

Contracts for two new research projects have been successfully issued by EB Resnet 2022.

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

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

DEBRA Indonesia hosted a free webinar to increase awareness and knowledge of oral and dental health for EB patients

This Special call will seek innovative proposals to develop therapeutics for severe unmet needs that can be brought rapidly to EB patients.

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.

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.

Graeme set a lofty target of raising £1.1 million from the Channel swim, which has now been surpassed with well over £1.2 million raised.

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™.

DEBRA UK completes EB patient insight study to better understand how EB impacts a patient's life and the type of care they receive.

The next EB Clinet Online Seminar is dedicated to the topic of 'Nutritional Needs and Anemia in Adults with EB'