Hospital Sant Joan de Déu
Sharing to move ahead

News

  • 03/27/2015
    La enciclopedia para los pacientes, familiares y público en general de Orphanet se basa en fichas informativas, producidas originariamente en francés, y sometidas a “revisión por pares” por parte de expertos y organizaciones de pacientes. Una selección de estas fichas, ha sido traducida y validada...
  • 03/25/2015
    En el marco de la VIII Conferencia Anual de las Plataformas Tecnológicas de Investigación Biomédica celebrada en Madrid, ayer tuvo lugar una mesa redonda sobre "Los pacientes en la investigación clínica", a la que fuimos invitados como asistentes por nuestra relación con la temática tratada...
  • 03/21/2015
    Presentation of RareCommons during the SHARE meeting held at the Hospital Sant Joan de Déu of Barcelona On Saturday Dr. Mercedes Serrano, principal investigator of collaborative research project Rare Commons, presented our initiative during the expert meeting organized by SHARE in our Hospital...
  • Orphanet
    03/19/2015
    Last newsletter of Orphanet was published past 17th of March. The topics, among others, are: European Report on policy developments Description of new syndromes, including the 20q11.2 microdeletion (described in six patients), chromosome Xq25 microduplication, among others. Information about...
  • 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...

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