Hospital Sant Joan de Déu
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News

  • 03/18/2015
    Ómica es un neologismo proveniente del inglés que en Biología Molecular se utiliza como sufijo para referirse al estudio de la totalidad o del conjunto de algo. Son cada vez más las disciplinas de la ciencia que están adquiriendo más exhaustividad gracias a las propia evolución de las técnicas y...
  • 03/14/2015
    Aina is six years old, a girl who enjoys life, laughing, playing ... has a rare disease called phosphomannomutase deficiency, or CDG-1a, the most common type of Congenital Defects of Glycosylation . In Spain about 70 people, mostly children, suffer this disease. In this documentary we can know the...
  • 03/11/2015
    It is increasingly common to speak about the patient and caregiver empowered, not only for its expertise in the knowledge and care of the disease, but also for its contribution to the advancement of medical science and research. The most important European and National entities that group patients...
  • 03/05/2015
    The presence of rare diseases in the media, fortunately, is increasingly day by day. Especially at this time, where before and after the 28 th of February the acts and commemorative events are spreading around the worldwide. Although rare diseases are more common than we think, in Spain as a whole...
  • 03/02/2015
    Orphanet is the reference website for information on rare diseases and orphan drugs, aimed at all audiences, published last February 28 its latest newsletter corresponding with the commemoration of World Rare Disease Day. Among the different topics of the news, we want to highlight: The celebration...
  • 03/01/2015
    The 28th February 2015 marks the eighth international Rare Disease Day. Orphanet Journal of Rare Diseases publishes cutting-edge review articles to provide the rare disease community with up-to-date information on specific rare diseases. Sharing this review articles Orphanet Journal of Rare...
  • 02/28/2015
    Number of medicines with new active substances continues to increase In 2014, the European Medicines Agency (EMA) recommended the highest number of orphan designated medicines for marketing authorisation in a year. Out of the 82 medicines for human use recommended in 2014, 17 are intended for the...
  • 02/21/2015
    The Rare Disease Day was established in 2008, being primarily a European initiative which from 2009 became a worldwide commemoration. The day chosen is February the 29th because it is a "rare" day on our calendar. This is a celebration whose main objective is to make visible the problem of rare...
  • Logo Rare Commons
    02/18/2015
    El próximo 27 de febrero, tendrá lugar la Jornada de Presentación del IPER (Instituto Pediátrico de Enfermedades Raras) y de Rare Commons, dos apuestas por la mejora asistencial y científica en enfermedades raras del Hospital Sant Joan de Déu de Barcelona. Las plazas para asistir al acto son...
  • síndrome de CDG
    02/13/2015
    The project objective is to develop and validate scales for assessing and monitoring neurological, cognitive-behavioral and neuroimaging traits of children with CDG . In the project are collaborating more than 10 Spanish hospitals coordinated by the group of Sant Joan de Deu Hospital and it...

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