NEWS

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

Mar 7, 2023

Nada Ashraf from Egypt shares her story this Rare Disease Day

Feb 28, 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 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

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

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

Remembering Prof Jouni Uitto

It is with a heavy heart that we share the news that a great legend in dermatology, Dr Jouni Uitto, passed away recently.

Jan 6, 2023

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

May 21, 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 23, 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

We welcome DEBRA Belarus as one of our three new member groups

DEBRA International is delighted to welcome DEBRA Belarus as one of its newest member groups. The Republican Public Association for Aid...

Mar 5, 2021

DEBRA Bosnia and Herzegovina launches picture book, Butterfly Boy

In 2019, DEBRA International was delighted to be able to support its member group, DEBRA BiH with a grant for their project to create and...

Feb 1, 2021

We welcome the Yasmin El Samra Foundation - DEBRA Egypt as one of our three new member groups

DEBRA International is delighted to welcome the Yasmin El Samra Foundation - DEBRA Egypt as one of its newest member groups. My name is...

Feb 1, 2021