EVERY year towards the latter part of October, the DEBRA organisations worldwide give visibility and generate solidarity for all those affected with the devastating and little known condition of Butterfly Skin.
Butterfly Skin (Epidermyolsis Bulllosa) is a genetic condition that causes extreme fragility of the skin. Even a simple embrace can cause blisters and open wounds. The skin is described as being as fragile as a butterfly’s wing. There are approximately 1,000 people affected in Spain and half a million throughout the world.
The Butterfly Children Charity (DEBRA Spain) is a non-profit organisation representing this group of people within Spain, organising different activities which are outlined below:
October 24, Premiere of the Butterfly Children Documentary in Caixaforum Madrid
Produced for the organisation, it is the first Spanish documentary about the condition which has been made with the intention of offering a realistic and encouraging view of what it is like to live with Butterfly Skin.
Those featured are Alberto, Lucia, Asier and Iñigo, who together with their families show how they live a ‘normal’ life despite the daily struggles of this ‘rare’ condition.
View the trailer https://youtu.be/BVale43jQVA
They, along with many other Butterfly Children and their families, specialist health professionals, representatives from the Government and other public personalities like Lourdes Maldonado will be at the premiere on the 24th October at 18.30 in CaixaForum Madrid.
October 25, International Day, online premiere of the documentary and viral campaign at www.docupieldemariposa.es
October 23 to 25, national meeting of the families of Butterfly Children
Since the birth of the Butterfly Children Charity more than 20 years ago, the families have been meeting yearly to share experiences and learn about the condition from each other, the experts and the professionals, so they will congregate in the Rafaelhoteles Atocha in Madrid to share, learn and participate in the activities of the Butterfly Children (EB) international day.