Name of Charity: The Butterfly Children Charity, DEBRA Spain

Register number: 119883

Contact name: Charo Van Hulst

Contact number: 619 50 51 80 / 666 33 79 78

Contact email address: butterflychildren@debra.es

Address:
C/ Jacinto Benavente No.12,
Marbella, 29601,
Malaga

Brief description:

DEBRA Spain is the national charity working on behalf of people in Spain with the genetic skin blistering condition Epidermolysis Bullosa (EB).

DEBRA Spain (the Butterfly Children Charity) is a non-governmental organization formed by people with EB, a team of social and health professionals specialized in EB, 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 Spain.

The Butterfly Children’s Charity was created to improve the quality of life for children with Epidermolysis bullosa.

EB is a rare genetic condition that causes the skin to be as fragile as a butterfly’s wing.

As soon as a baby leaves the protection of the womb, the lightest touch causes painful open wounds leading to a life of disability and severe pain.

Children with EB require daily care: each treatment is unbearably painful and parents must quickly learn to become full time care takers.

Life expectancy for children with EB is often short and families must be supported from the very first day as the devastating reality of living with this condition becomes clear.

Our mission is to be there from day one: to help, offer guidance and deliver expert advice to parents, and to provide access to a dedicated team of specialist nurses, social workers and psychologists.

Next event / news:

With the temporary closure of our charity shops and the postponement of the fundraising events due to COVID-19 that financially support DEBRA, we are facing a devastating loss of funds.

Now more than ever we need your support to secure the future of the charity and the work that we do.

Please support us by giving if you can.

If you are unable to contribute financially but you know people or businesses that may be in a position to help please share the attached poster with your contacts.