The EB international awareness day takes place on the 25th of October
Bringing together organisations from over 112 countries around the world to raise awareness for Epidermolysis bullosa: this global union serves not only to underline the obstacles that children, adults and their families face on a daily basis, but also to show their strength and courage in the face of such extreme adversity.
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, extending to up to 80% of the body, leading to a life of disability and severe pain.
There are over 500 people affected by EB in Spain and every year there are between 5 and 10 babies born with the condition.
DEBRA, the Butterfly Children’s Charity, was created to improve the quality of life for children and adults with Epidermolysis bullosa: 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.
This year the DEBRA Butterfly Children’s Charity is using this opportunity to publish a manifesto that conveys the basic needs for patients and their families living with this condition that are not currently met by the National Health Service in Spain.
INTERNATIONAL EB DAY MANIFESTO OUTLINED
The Butterfly Children’s Charity is dedicated to transforming lives and helping to build a brighter future for children and their families. Your contribution and support will help us to continue to expand our team of specialist health care workers so that we can ensure every family has access to the correct care and treatment.
Each year we aspire to build upon our successes and continue to campaign and innovate in our methods to drive awareness for EB.
You can help by contributing in the form of sponsorship, by donating funds or by providing quality goods to sell in one of our 12 charity shops.
Please take a few moments to find out more at
www.butterflychildrencharity.com / https://www.pieldemariposa.es/en/
Follow us on: @pieldemariposa
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For further information or to request an interview contact:
Charo van Hulst – 666 33 79 78 – butterflychildren@debra.es
