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We join forces with EB reference centres across Spain

The University Hospital of La Paz in collaboration with the Butterfly Children’s Charity hosted the II Multidisciplinary EB seminar for the second consecutive year.  This meeting of representatives from both La Paz and the San Joan de Deu hospital represents a significant milestone in raising awareness for EB and the importance of specialist training for national health professionals.

The event was inaugurated by Dr Raul de Lucas, Head of the dermatology department for children at the La Paz University Hospital, Pedro Herranz Pinot, head of dermatology, M. Carmen Hernandez Gancedo, deputy head of the university hospital and Evanina Morcillo, director of the Butterfly Children’s Charity.

Specialist health care professionals from the reference centres gave presentation on:  healthcare, surgical procedures, postoperative care, social care and mental health.  This was a fantastic opportunity to share the combined knowledge and experience from a group of experts and is invaluable when treating a rare disease:  the collaboration and cooperation between the 2 reference centres is absolutely fundamental to improving the care and treatment of people living with EB.  Taking a holistic approach to the condition requires the involvement of specialist from all medical disciplines.

Celia, a patient from the University Hospital La Paz and member of the charity took a moment to share her experiences of the care and treatment at the hospital.

The La Paz University Hospital is currently in the process of running a study on the use of Mesenchymal stem cells to treat the disease. This is a preliminary clinical trial to evaluate the infusion of haploidentical mesenchymal stem cells from bone marrow for the treatment of recessive dystrophic EB.   The research is co-financed with DEBRA.

The Butterfly Children’s Charity works hard to continue to improve the lives of families affected by EB as well as raising awareness through our social media campaigns #YoVendoMiCuerpo and #ElCasodeLosIntocables We continue to contribute to raising important funding for research into a possible cure or treatments which will help to alleviate symptoms.

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