Clinical trials to help Butterfly Children

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PEOPLE living with Epidermolysis bullosa, a rare genetic skin disease more commonly known as Butterfly Skin have seen a positive start to 2017 as a clinical trial on a possible treatment is starting this year in Spain.

The aim of the trial is to evaluate how mesenchymal cells, derived from bone marrow, can improve the healing of wounds caused by Butterfly Skin.

This important trial is being promoted by the Foundation for Biomedical Research La Paz University Hospital and will be carried out by the Department of Haematology and Dermatology at the hospital in Madrid.

The trial, which is approved by the Spanish Agency of Medicines and Sanitary Products, has a budget of €308,000 of which 75 per cent is being financed by the Carlos III Institute of Health and the remaining 25 per cent by the patients association “DEBRA, The Butterfly Children Charity.”

In addition, the charitable association will also be funding a molecular geneticist for one year and with this extra resource Butterfly Children families will have better access to genetic diagnosis of their condition.

This is extremely important for both the affected and their relatives because it clearly defines what type of Epidermolysis bullosa they suffer from therefore providing prognostic value. It is also necessary for future family planning and for the affected to take part in clinical trials such as this.

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