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 the first tournament will take […]
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 uses an inactive virus (HSV-1) […]
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 the participation of the nursing […]
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 series of videos published on […]
DEBRA ON THE ROAD: Home visits between May and July
At DEBRA we believe it is fundamental to be there to support families who have given birth to a baby with Butterfly Skin: to be there at their side, to help at this extremely challenging time and to ensure that all of the medical staff are fully up to date with the latest care procedures […]
The school for physiotherapy in Catalonia, the Butterfly Children’ Charity and Go2 have joined forces to offer physiotherapy to families with Butterfly Skin.
Physiotherapy plays a key role in improving the quality of life for people with EB: increasing movement and reducing the risk of permanent disability. This collaboration is key for DEBRA, as despite the efforts made by the charity, physiotherapy is not included as a service for families on the National Health Service. The aim […]
DEBRA ON THE ROAD: Visits from our specialist health care team during April
When a baby with Butterfly Skin is born the whole family find themselves in a situation of confusion and desolation. Our aim is to be with families as soon as we receive notification from a hospital so that we can be on site to offer our support as quickly as possible at this very difficult […]
Improvement on the accuracy of gene editing in the treatment for Epidermolysis bullosa
Epidermolysis bullosa or Butterfly Skin is characterised by the extreme fragility of the skin and carries a high risk of aggressive skin cancers for patients. Scientists from CIEMAT, UCSM and CIBERER in collaboration with the institute for research at the Jimenez Dias Foundation and the University of Stanford in the U.S have managed to increase […]
The Carrefour Foundation finances a specialist paediatric unit for wound care a La Paz Hospital for children with Butterfly Skin
The Carrefour Foundation financed the acquisition of the equipment for a paediatric unit for patients with Epidermolysis bullosa at La Paz University Hospital, (an important national reference centre for EB) that currently attends to approximately 50% of people with EB in Spain, the majority of these are children. The Carrefour foundation in collaboration with DEBRA […]
DEBRA on the road
Our specialist team has continued to work despite the global pandemic, ensuring that families are supported with access to remote advice at all times. Some cases require urgent care and face to face attention: the birth of a baby with Butterfly Skin, when a child needs to be admitted to hospital or to undergo surgery, […]