NEWS

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.

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

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

DEBRA International attends the 2023 EWMA Conference

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.

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

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

The free workshop was held over two days and aimed at healthcare professionals, the EB Community, patients, and families.

Nada Ashraf from Egypt shares her story this Rare Disease Day

The Art Contest called “The story of my skin” started on 28th February during International Rare Disease Day and will finish on 30th May.

DEBRA UK has commissioned a specialist medical research agency to conduct a detailed EB patient insight study on their behalf.

'Smile to life, whatever the obstacles'

We are delighted to share that Amryt Pharma received the EURORDIS company award for patient engagement at the Black Pearl Awards