NEWS

The event gave clinical, research, and industry updates on EB, successful collaborations with DEBRA, and building impactful patient groups.

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.

Heel Colombia has set forward a plan to rewrite the future with the purpose of transforming lives through different projects.

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.

DEBRA Germany had a wonderful weekend with a group of EB families in Schmallenberg/ Sauerland.

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.

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.

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