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.