NEWS

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

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

In memoriam: Catina Bernardis

Jan 31, 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 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

We welcome DEBRA South Africa as one of our newest member groups

DEBRA International is delighted to welcome DEBRA South Africa as one of its newest member groups. DEBRA South Africa started in 2020...

Dec 21, 2022

Taking DEBRA to new heights

During EB Awareness Week 2022, DEBRA International followed the endeavours of Dr Niraj Parajuli, a dermatologist from the National...

Dec 21, 2022

First-ever EB meeting held in Bangkok, Thailand

Ritu Jain, DEBRA International President travelled to Thailand to take part in the first-ever EB meeting, which was held with the support...

Dec 21, 2022

NEW! Physiotherapy for EB: clinical practice guidelines

We are delighted to announce the publication of the "Physiotherapy for epidermolysis bullosa: clinical practice guidelines" in the...

Oct 7, 2021

Sesión virtual para pacientes y familias dedicada al proyecto sobre EB de Rare Commons

May 20, 2021

Take part in an international research study on burden and resources in EB - online survey

Take the survey in English: https://survey.sfu.ac.at/EB2021/?q=E_Qnr Take the online survey in German: https://survey.sfu.ac.at/EB2021/?q...

May 7, 2021

Únete a Rare Commons para compartir tus experiencias y ayudar a mejorar el conocimiento de la EB

Rare Commons es un proyecto de investigación del Hospital Sant Joan de Déu de Barcelona que se centra en el estudio biomédico de las...

Apr 22, 2021

People with EB in Brazil have the opportunity to access genetic sequencing tests free of charge

With 28th February 2021 marking Rare Disease Day, DEBRA Brasil and Illumina have joined forces to launch a pioneering and high impact...

Mar 13, 2021