NEWS

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...

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

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...

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...

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...

Meet the team behind the creation of the supporting sexuality for people with EB CPG

Every CPG published is the result of 18-24 months of hard work and dedication by a volunteer panel of clinical and patient experts.

NEW! Supporting sexuality for people living with EB CPG now published

The "Supporting sexuality for people living with EB: clinical practice guidelines" have been published!