NEWS

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.

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

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

It is with a heavy heart that we share the news that Lisa Brains, born with recessive dystrophic EB from Melbourne, Australia passed away