THE first two Spanish reference centres for people suffering with the condition Butterfly Skin will be officially presented on Wednesday October 25, in cohesion with International Butterfly Skin Day.
Butterfly Skin, or Epidermolysis bullosa, is a rare, incurable disease, characterised by extremely fragile skin.
Daily activities such as walking, eating or a simple hug can cause blisters and wounds that may take months to heal.
The presentation of the new centres will take place at the La Paz Children’s Hospita in Madrid, with a number of guests in attendance, including the Ministry of Health, the Regional Health Service of Madrid, health professionals and special guest Princess Elena of Spain, who is the project director of the MAPFRE Foundation.
Being a rare and unknown disease, Butterfly skin patients often find it difficult to access to the necessary health care.
For decades, the DEBRA Butterfly Children’s Charity has been fighting for the right to have an official Reference Centre for people to attend and for the specialist health professionals to work from.
And on October 25, in collaboration with La Paz Hospital and Sant Joan de Déu Hospital, the charity will finally be able to present the first Reference Centres of Epidermolysis bullosa or Butterfly Skin in Spain which were recently designated by the Ministry of Health, Social Services and Equality.
During the presentation, there will be words from the head of Paediatric Dermatology of La Paz Hospital, representatives of the Ministry of Health, the Regional Health Service of Madrid and the President of DEBRA Butterfly Children’s Charity.
The presentation will be concluded by Princess Elena of Spain who will talk about how DEBRA Butterfly Children’s Charity is benefiting from the MAPFRE Donate a Euro campaign.
International Butterfly Skin Day is a key day for informing society of the reality of living with this condition.