By your side in hospital

11 February, 2022

This service is an initiative that was created to train, support and advise both families and medical teams at the EB reference centres of the University Hospital of La Paz in Madrid and the Sant Joan de Deu hospital in Barcelona.  We take a holistic approach to this service with the participation of the nursing team, psychology team and social workers.


The support offered includes:

  • Advise patients, their families and the medical team on everything relating to the condition from treatments and care to any complications that may arise.
  • Accompany families, and or medical staff during hospital visits, appointments, tests or time spent in hospital.
  • Provide up to date information on research projects and their results and any improvements on clinical treatment specifically related to EB.
  • Coordinate information on health, social services and mental health treatment.
  • To advise and raise awareness amongst the medical team at the La Paz Hospital and the Sant Joan de Deu Hospital in Barcelona.

Compartir en redes sociales:



Síguenos en redes

Otros artículos relacionados

DEBRA the Butterfly Children’s Charity is pleased to launch the “Living with Butterfly Skin” campaign: a documentary that encourages you to empathise with a family with Butterfly Skin

This organisation is the only support group for families with Butterfly Skin in Spain: a rare and incurable disease, which currently affects more than 500 people in Spain.  It is characterised by the extreme fragility of the skin, leading to lifelong pain and disability.   A short documentary and a

Leer más

DEBRA ON THE ROAD: Home visits between May and July

At DEBRA we believe it is fundamental to be there to support families who have given birth to a baby with Butterfly Skin: to be there at their side, to help at this extremely challenging time and to ensure that all of the medical staff are fully up to date

Leer más