NEWS

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

Maria Korosta, a paramedic living in Korost, a village in Rivne Pblast, Ukraine with her 2 boys Maksym (13) and Mykola (8)

On 8th February 2023, DEBRA Ukraine received 200 kg worth of humanitarian aid for 60 EB patients living in the country.

In memoriam: Catina Bernardis

DEBRA Mexico's 1st EB Health Workshop. This workshop reflects the commitment of the global EB community to work together to promote health,

DEBRA Egypt celebrates EB Awareness Week on the Nile with EB patients and their families.

Ukraine - a mother's note of hardship and hope

DEBRA Germany introduces a new video on EB wound care.

DEBRA UK raises a phenomenal £140,000 at its annual Fight Night event!

EB Awareness Week 2022 in Croatia was full of various activities.