Training Matters: The La Paz Hospital focuses on teaching to improve the care available for people affected by the rare disease, Epidermolysis bullosa

25 February, 2019

In collaboration with the DEBRA, the Butterfly Children’s Charity, the University Hospital of La Paz (one of the official reference centres for the disease) organized a structured training day for national healthcare professionals, on the best treatment and care options available for patients affected by this relatively unknown rare disease. 

During the course of the day, EB specialists talked about what it means to be born, grow and live with this devastating skin condition.   Dr Raul de Lucas, head of infant dermatology for the La Paz Hospital, announced that this event would make a real difference to the quality of care available for families with EB.

During the inauguration of the presentations Dr Javier Cobos, managing deputy director for the hospital, added that a hospital like La Paz was under an obligation to “work, research and give real answers to patients with this rare condition”.

The charity took this opportunity to give special thanks to all of those involved, for their support and help in raising awareness for the condition.

Compartir en redes sociales:

DOSSIER DE PRENSA

Categorías

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