• The charity needs to recruit 2 nurses and a psychologist to care for families with Butterfly Skin.  They currently have 3 nurses and 2 psychologists to support over 350 families with this rare condition.
• On International Butterfly Skin Day the charity are launching a fundraising campaign titled “doing our bit” and urge everyone to make a donation to raise the 25.500 euros needed to recruit a nurse.  An hour of care costs 25 euros.
•  The “30 years of care” campaign, involving 8 families and some of the charity’s health care workers, aims to raise awareness on the importance of personalised, quality care, that notably improves the quality of life for families.
•  Butterfly Skin is a rare, genetic and incurable condition that causes extreme fragility of the skin, and with this, both external and Internal wounds which cover up to 80% of the body.  DEBRA Butterfly Skin is the only support organisation available to families.

On International EB day, the charity is asking for support to extend the healthcare and mental health support available to families with Butterfly Skin:  A rare, degenerative and incurable condition which causes extreme fragility of the skin.

They currently have 3 nurses, 2 psychologists, 3 social workers and a researcher looking after over 350 families, but urgently need two more nurses and a psychologist to guarantee the quality of care for families.  The total cost amounts to 76.500 euros.

The aim is to raise the amount to cover the cost of a specialist nurse 25.500 euros.  “1 hour of nursing costs 25 euros.  If we can get 1000 people to donate 25 euros, we can reach our fundraising target. Thanks to this, we could notably improve the quality of life for people living with open wounds and having to endure painful daily treatments which can take up to 5 hours a day.”

“Families urgently need this care.  We are the only organisation supporting families in Spain.  We have so many families, and the team is just too small to provide the level of care and support required.  Given that the hospitals and national health service are not able to provide this we are even more important as a support system for families” said Evanina Morcillo Makow, CEO of the charity.

“The charity is committed to providing the best possible level of care and to continue to ensure that as soon as a baby is born with Butterfly Skin, a team is on site within 48hours to care for families and to provide expert advice to doctors and health care professionals in the hospitals”.

Specialist nurses, psychologists and social workers provide ongoing support either in person or remotely to families and there is a 24-hour dedicated helpline available for emergencies.  In the last year they dedicated more than 16 000 hours to supporting families and covered over 62.300 kilometres to offer care and support.

 30 Years of Care

The aim of this campaign which provides light and hope is to raise funds to recruit two new nurses and a psychologist to improve the quality of life for families.

Fighting for their rights

The other key function for the charity is to defend the needs and rights of families.

In the last 30 years they have made significant progress to improve the quality of life for people with EB.  In 2015 an agreement was made so that all the autonomous communities in Spain committed to providing dressings and other medicines free of charge to families, who up until that point had covered the cost themselves. Diagnostic testing is now also available on the national health and the specialist team at the charity includes 49 employees dedicated to helping families “until a cure is found”.