News
We need more support for our families
Challenging health care bureaucracy “opens wounds” for patients with Butterfly Skin
DEBRA “The Butterfly Children Charity”continues to work so that the “timeline” established by law to include a new wound healing treatment on the National Health Service, be met as quickly as possible. Families with Butterfly Skin will have to wait approximately 3 years until this treatment is made available. Legislation
The Butterfly Skin Charity are asking for urgent help to continue to care for people who live with pain and open wounds
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”
Butterfly Children’s Charity Golf Tournaments 2022
The Butterfly Children’s Charity golf tournaments ang galas return after two years of cancelled galas due to the coronavirus pandemic. These tournaments are vital for raising awareness and important funding which contribute directly to improving the quality of life for families with EB. The charity is delighted to announce that
New gene therapy for EB
After publication of the article in “Nature Medicine Magazine” on the new gene therapy treatment for recessive dystrophic EB, DEBRA are delighted to bring you further information on this exciting new discovery. What is B-VEC? This is a non-invasive gene therapy, which is applied directly to the skin. The therapy
By your side in hospital
This service is an initiative that was created to train, support and advise both families and medical teams at the EB reference centres of the University Hospital of La Paz in Madrid and the Sant Joan de Deu hospital in Barcelona. We take a holistic approach to this service with
DEBRA the Butterfly Children’s Charity is pleased to launch the “Living with Butterfly Skin” campaign: a documentary that encourages you to empathise with a family with Butterfly Skin
This organisation is the only support group for families with Butterfly Skin in Spain: a rare and incurable disease, which currently affects more than 500 people in Spain. It is characterised by the extreme fragility of the skin, leading to lifelong pain and disability. A short documentary and a