Latest news

  • “It is really hard, but I take strength from working with a team”

    Miriam is one of our greatest treasures.  She is a specialist nurse and is a key member of our team.  With news of the lockdown and the rising number of people affected by COVID-19, Miriam joined the group of front line health care professionals fighting against the virus.  We are very much looking forward to […]

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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 […]

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  • We join the International Awareness Day for Rare Diseases and consolidate our relationship with CIBERER

    Today, 29th of February 2020, we join the campaign created by the Spanish Federation for rare diseases (FEDER) “Our hope grows with you” to celebrate world awareness day for EB.   With this we would like to underline and communicate the importance of equality when it comes to accessing treatments and care.  This must be of […]

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  • The Butterfly Children’s Charity visit Ceuta to train National Health Care medical professionals

    DEBRA nurse, Esther and social worker, Juanma travelled to Ceuta to deliver information on EB to health care professionals with the collaboration of the National Institute for health (INGESA).  It is essential to raise awareness amongst medical professionals within the National Health Service as this contributes to improving the quality of care available for families.  […]

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