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.