• Intrinsic motivation with a pinch of salt: the conceptualization of badges in Share4Rare

    If you have ever attended a talk on the topic of gamification, you will have noticed that a concept is on everyone’s lips: motivation . And rightly so: it is one of the cornerstones to understanding
  • Markel’s story: the uncertainty of living without a diagnosis

    Markel lives with his parents, María and Vicen, and his older sister Carlota in Urnieta, a small town near San Sebastián, Basque Country (Spain). He will become 13 in August, but he looks much younger
  • Share4Rare: a unique community of patients that you would never have imagined

    One of the greatest challenges that rare disease patients and families have to face is the feeling of loneliness . This emotion is present during the diagnostic process — which may last for years —
  • Inflammatory myofibroblastic tumors: treatments and research

    Because of the low index of metastasis in inflammatory myofibroblastic tumours (IMTs), surgery is normally the preferred and best option. The surgical resection of the tumour can be definite and
  • What are inflammatory myofibroblastic tumors?

    Inflammatory myofibroblastic tumors are more commonly referred to as IMTs . Their name comes after two different types of cells: “Myo” comes from the greek term “ Myos ”, which means muscle, and
  • Can children get melanoma?

    Skin melanoma in children is very rare: out of 1.1 million children under the age of 4, less than 1 will be diagnosed with melanoma. For children under the age of 10, the number of melanoma cases has
  • What is infantile myofibromatosis?

    Infantile myofibromatosis (IM) is a rare benign soft tissue tumor, meaning it can grow wherever there is soft tissue – this includes many tissues in our body, the most prevalent areas are the skin and
  • RareHacks: open registration!

    The access of rare disease families to quality , curated information about a particular disease is difficult due to many factors, including data gathering, curation, quality or unbiased interpretation
  • What causes myotonic dystrophy type 1?

    Myotonic dystrophies are genetic disorders. They are systemic conditions, meaning they affect many systems in the body, not only the muscles. The genetic alteration that causes myotonic dystrophy is
  • Why using Drupal strengthens one of the main goals of the Share4Rare platform: Empowerment

    For those of you unlucky enough not to know what Drupal is, let us introduce it. Drupal is an open-source system for content management which has a worldwide community with over 500,000 (very active)
  • What are the causes of neuroendocrine pancreatic tumors (pNETs)?

    Genetic origin of pNETs As it seems, there are several risk factors that may make a child or adolescent more likely to develop a neuroendocrine pancreatic tumor or pNET . These risk factors are
  • How to detect and tackle pseudoscience

    Why do we tend to believe pseudoscience? We are at a time where many people are mistrustful of experts: in climate change, in politics, and to a certain degree in health care. Due to an expanding