Epidermolysis bullosa or Butterfly Skin is a group of rare genetic skin conditions, which is characterised by extremely fragile skin and recurrent blister and ulcer formation, resulting from minor mechanical friction or trauma. The disease affects one in 50,000 children and requires continuous treatment and bandaging. Butterfly Skin patients live with a reduced quality of life. You can see the effects of the disease in this video.
The Butterfly Children Charity (DEBRA Spain) is the national charity working on behalf of people in Spain with this rare condition. The Butterfly Children Charity is a non-governmental organization formed by people with Butterfly Skin, a team of social and health professionals specialized in the condition, as well as friends and collaborators. It was founded in 1993 and is designated as a “registered and audited charity” by the Internal Affairs Ministry of the Interior of Spain. Its mission is to offer specialist care to those who need it, to give support to people and families affected and to provide real hope for the future by supporting pioneering research which will one day find a cure among many other responsibilities.
AffiliRed has made a donation for this cause but we specially want to help The Butterfly Children Charity (DEBRA Spain) by sharing information about this disease in all our channels. These children suffer the hard consequences of this disease everyday and we desire to express solidarity with them as well as with their families and the charity. AffiliRed invites you all to cooperate with them too with donations or by disseminating related information.
Thanks to DEBRA Spain for all its work and thank you all for the future help. You can contact DEBRA Spain here.