• 10 things we learned from choosing chatbots as a theme for our rare disease hackathon

    This weekend the Share4Rare hackathon RareHacks took place in Barcelona. During these three days, over 45 data scientists, computer scientists and clinicians joined forces in response to the needs of
  • Understanding the Sturge-Weber syndrome

    The Sturge-Weber syndrome is characterized by the deficient development of certain blood vessels, leading to structural abnormalities; especially in the brain, skin and eyes. Three features are
  • Inflammatory myofibroblastic tumours: treatments and research

    Due to the low metastasis rate observed in inflammatory myofibroblastic tumours (IMTs), surgery typically stands out as the preferred and most effective option. Surgical resection of the tumour is
  • What are inflammatory myofibroblastic tumours?

    Inflammatory myofibroblastic tumours 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
  • 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
  • Diagnosing and treating gliomatosis cerebri

    What is a biopsy? A biopsy is an extraction of little samples of tissue that are to be checked under the microscope by pathologists. Tumors are biopsied in their origin, to assure that tumor cells are
  • CPMS Platform for European Reference Networks (ERNs)

    European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe who aim to tackle complex or rare diseases and conditions. There are 24 ERNs involving 25 European
  • Giant congenital melanocytic nevus - Causes and Consequences

    Lucas was born with some birthmarks on his skin. These giant marks appear due to a defect in the melanocytes during the embryonic development. These cells are responsible for producing melanin, the
  • Melanoma - back at the Edge

    MPNE, the Melanoma Patient Network Europe, is a network of melanoma patients and carers that connects people across language barriers in Europe to make sure correct information and support reaches any
  • Cancer therapies assessment indicators need to be reviewed according to a novel study

    A recent publication on JAMA Internal Medicine refutes any association between progression-free survival (PFS) and health-related quality of life (HRQoL) in cancer patients. In other words, delaying