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NEWS


DEBRA Croatia celebrates Rare Disease Day
DEBRA Croatia celebrated Rare Disease Day with a radio & television feature, Zoom lectures, & took part in an event by Rare Disease Bahrain.
Mar 23, 2023


EURORDIS Black Pearl Awards 2023: United for Ukrainians Living with a Rare Disease
Orphan Diseases of Ukraine received the EURORDIS Black Pearl Award: United for Ukrainians Living with a Rare Disease.
Mar 15, 2023


DEBRA Colombia attends the 33rd National Congress of Dermatology
DEBRA Colombia was invited to attend the trade show with a stand to continue raising awareness of EB and care routes in Colombia.
Mar 14, 2023


Yasmin El Samra Foundation-DEBRA Egypt 'draws' interest in their annual competition
Every year, the Yasmin El Samra Foundation-DEBRA Egypt in cooperation with El Sawi Wheel Center in Cairo has held a drawing competition.
Mar 13, 2023


DEBRA Ireland launches an EB Expert Panel to help shape its support and research priorities
An EB Expert Panel was launched by DEBRA Ireland to help shape their support and research priorities.
Mar 10, 2023


Celebration of the 15th World Day of Rare Diseases in Colombia
On 26th February, the 15th World Day of Rare Diseases was commemorated in the city of Bogotá, Colombia.
Mar 8, 2023


DEBRAs International and Egypt attend the MENA Organisation for Rare Diseases 2023 meeting in Dubai
DEBRAs International and Egypt attend the MENA Organisation for Rare Diseases 2023 meeting in Dubai
Mar 7, 2023


First health workshop "Salud sin Fronteras" ("Health without Borders") held in Mexico
The free workshop was held over two days and aimed at healthcare professionals, the EB Community, patients, and families.
Mar 1, 2023


Nada Ashraf from Egypt shares her story this Rare Disease Day
Nada Ashraf from Egypt shares her story this Rare Disease Day
Feb 28, 2023

Your members' chance to participate in “The story of my skin” Art Contest
The Art Contest called “The story of my skin” started on 28th February during International Rare Disease Day and will finish on 30th May.
Feb 28, 2023


DEBRA UK commissions EB patient insight study
DEBRA UK has commissioned a specialist medical research agency to conduct a detailed EB patient insight study on their behalf.
Feb 24, 2023


EURORDIS Photo Awards 2023
'Smile to life, whatever the obstacles'
Feb 22, 2023

Congratulations to Amryt Pharma - recipients of a EURORDIS Black Pearl Award!
We are delighted to share that Amryt Pharma received the EURORDIS company award for patient engagement at the Black Pearl Awards
Feb 21, 2023


In memoriam: Lisa Brains
It is with a heavy heart that we share the news that Lisa Brains, born with recessive dystrophic EB from Melbourne, Australia passed away
Feb 15, 2023


Maria Korosta's letter to us all
Maria Korosta, a paramedic living in Korost, a village in Rivne Pblast, Ukraine with her 2 boys Maksym (13) and Mykola (8)
Feb 10, 2023


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


In memoriam: Catina Bernardis
In memoriam: Catina Bernardis
Jan 31, 2023


DEBRA Mexico's 1st EB Health Workshop
DEBRA Mexico's 1st EB Health Workshop. This workshop reflects the commitment of the global EB community to work together to promote health,
Jan 30, 2023


DEBRA Egypt celebrates EB Awareness Week 2022 on the Nile with EB patients and their families
DEBRA Egypt celebrates EB Awareness Week on the Nile with EB patients and their families.
Jan 27, 2023

Ukraine - a mother's note of hardship and hope
Ukraine - a mother's note of hardship and hope
Jan 25, 2023

DEBRA Germany introduces a new video on EB wound care
DEBRA Germany introduces a new video on EB wound care.
Jan 23, 2023


DEBRA UK raises a phenomenal £140,000
DEBRA UK raises a phenomenal £140,000 at its annual Fight Night event!
Jan 20, 2023


EB Awareness Week 2022 in Croatia
EB Awareness Week 2022 in Croatia was full of various activities.
Jan 17, 2023


DEBRA Indonesia's theme for EB Awareness Week 2022
DEBRA Indonesia celebrates EB Awareness Week 2022 : get to know EB, Butterfly Children, and the EB Community in Indonesia
Jan 10, 2023
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