• #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
  • An interview with Jeffrey Galuidi — Father of a young boy with congenital myasthenic syndrome

    Jeffrey Galuidi is Jackson’s father, a young boy with congenital myasthenic syndrome (CMS), a rare neuromuscular disease. “Jackson was diagnosed with a general muscle wasting condition a couple of
  • Wednesday is Share4Rare User Day

    In 2020 hundreds of people from 50 countries were connected in the Share4Rare community. The pandemic has forced us to include technology in our day to day life and you may have some doubts about the
  • 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
  • Smart Tech: Improving the lives of millions living with a long-term disease

    Chronic diseases present a significant challenge to the European Union, costing over €700 billion annually and affecting one third of all adults. Furthermore, each year over 4 million people pass away
  • Exercise in neuromuscular disorders: a moving topic

    Nicole Voet is a rehabilitation physician and scientific researcher in the Rehabilitation Centre Groot Klimmendaal in Arnhem and in the academic medical hospital Radboud University Medical Centre in
  • How online education can help children with rare diseases

    The number of European Union citizens living with rare diseases is estimated to be around 30 million, according to Eurordis Rare Diseases Europe. In fact, 1 in 17 people will be affected by a rare
  • Natalí Dafne Flexer Foundation: helping children with cancer in Argentina for 25 years

    Natalí developed cancer and died one year and three months after starting treatment, in July 1995. In her memory, her mother Edith created the Natalí Dafne Flexer Foundation (FNDF) to help children
  • Aleksandra talks about her experience of caring for her children with rare neuromuscular diseases

    Aleksandra has two children affected by a rare neuromuscular disease. Her son has a diagnosis of limb-girdle muscular dystrophy type 2D (LGMD2D) and her daughter has a diagnosis of collagen VI
  • Coronavirus and rare diseases — How can we reduce transmission and cope with a rare disease during these days?

    The new coronavirus outbreak is affecting people all across the planet, but there are communities who are especially vulnerable to this situation. We have learned that people over 60 — and this is
  • The rebellion of the leukocytes: Íngrid’s story

    One day, in the summer of 2018, Íngrid felt an unusual pain in the elbow and she noticed it was swelling. The traumatologist concluded that it was due to a simple tendonitis probably caused by the
  • When the sun is your enemy: Pol’s story

    When Pol was only two months old, the first sunburn appeared on his face. Shortly after, similar injuries began to show, major burns in those areas of his body that were not protected by clothing