• #S4RMonth activity: Caring for caregivers and patients in pandemic times

    As you may already know, throughout the February we are celebrating #S4RMonth, an extensive calendar of educational and sharing activities framed in the commemoration of Rare Disease Day, which takes
  • Report - 3rd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases

    The challenge of undiagnosed patients: challenges and needs Dr. Marcelo Andrade opened the first table of the third day of the congress. This paediatrician at the Sant Joan de Déu Hospital explained
  • International Congress on the Effects of COVID-19 on People with Rare Diseases

    The International Congress on the Effects of COVID-19 on People with Rare Diseases will be held on November 9-11th 2020 and it is organized by the Sant Joan de Déu Barcelona Children's Hospital
  • How do you comfort a child with a rare disease?

    Psychologically speaking, the relief from a chronic pain is more than necessary in order to help the patient carry on with this very difficult condition. In regards with a child with a rare disease
  • Effects on parents when a child has a rare disease

    In October 2011, author Emily Rapp wrote an outstanding essay on life as a rare disease parent and her experience of raising her son, Ronan, under the shadow of Tay Sachs disease for the New York
  • Àngels Ponce: «It never ceases to amaze me how children actually see illness and disability as natural things»

    S4R: It is difficult to know that a child is having a hard time if he/she does not express it. Often, the siblings of sick children prefer not to bother their parents with their problems if they