NEWS

Debra Ireland have been working hard to refresh its look to make it more relevant, accessible and in line with what they want to achieve.

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.

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

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.

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

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

Every year, the Yasmin El Samra Foundation-DEBRA Egypt in cooperation with El Sawi Wheel Center in Cairo has held a drawing competition.

An EB Expert Panel was launched by DEBRA Ireland to help shape their support and research priorities.

On 26th February, the 15th World Day of Rare Diseases was commemorated in the city of Bogotá, Colombia.

DEBRAs International and Egypt attend the MENA Organisation for Rare Diseases 2023 meeting in Dubai