Epidermolysis bullosa

When we talk about a low prevalence disease we are not only talking about a disease suffered by few people, we are also talking about it being a disease which few sanitary professionals know of and have experience in its management and treatment. Because of this, there is a latent need to create Reference Centres, Services or Units (RCSU) for each concrete disease, where there is a multidisciplinary professional team who have deep knowledge of said disease, its complications and ways of treatment, and also be updated on the latest treatments and investigations available to the people who suffer from it. In epidermolysis bullosa we have two Reference Centres on a national level, designed by the Health Ministry.

1. Sant Joan de Déu University Hospital (HSJD) in Barcelona, with Dr Asunción Vicente as the dermatologist responsible for epidermolysis bullosa in paediatric age and the Clínic University Hospitalin Barcelona with Dr Josep Riera as the dermatologist responsible for epidermolysis bullosa in adults. Also, they have the nurses specialized in the disease Sofía Munguia and Inés Villasuso at HSJD and Núria Moragas at the Clínic Hospital. There are other specialties inside the team tending to the families, like paediatrics, traumatology, nutrition, digestive, etc. Also noteworthy is the existence of the Chronic Unit that attends to the most complex cases of the disease.
2. La Paz University Hospital in Madrid, with Dr Raúl de Lucas as the dermatologist responsible of epidermolysis bullosa, together with his partners Dr Rocío Maseda and DrLucía Quintana. Also, they have the nurse specialized in the disease Isabel Pérez. There are other specialties inside the team tending to the families, like paediatrics, traumatology, nutrition, digestive surgery, etc.

It is recommended to have, at least, a yearly evaluation at one of the two RCSU.

Apart from these two RCSU there are other hospitals in Spain with experience in the management of patients:

1. Virgen del Rocío University Hospital, Seville.
2. La Fe University Hospital, Valencia.
3. Vall d’Hebron University Hospital, Barcelona.

On the other hand, we also have these other entities and professionals at a national level with wide experience on the disease:

1. Nova Dental Clinic, Valencia, where Dr Concepción Serrano, stomatology professional, works, who has wide experience in the oral treatment of people with EB.
2. Carlos III Health Institute, Madrid, where the genetic diagnostic of people suffering the disease is done, with Dr Beatriz Martínez as one of the responsible people.
3. Energetic, Environmental and Technologic Research Centre (CIEMAT), with Dr Fernando Larcher as the responsible for the investigation group for EB, together with Dr Marcela del Río and Dr María José Escámez.