NEWS

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.

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'

DEBRA International attends the 2023 EWMA Conference

ERN Skin meeting held in Paris attended by DEBRA representatives from Ireland, Croatia, and Belgium

DEBRA Chile holds 2nd Research Day for EB patients and families.

EB Research Network has created a new online tool to make tracking of clinical trials easier

DEBRA Croatia celebrated Rare Disease Day with a radio & television feature, Zoom lectures, & took part in an event by Rare Disease Bahrain.

Orphan Diseases of Ukraine received the EURORDIS Black Pearl Award: United for Ukrainians Living with a Rare Disease.

DEBRA Colombia was invited to attend the trade show with a stand to continue raising awareness of EB and care routes in Colombia.