• 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
  • Share4Rare webinar VII: ‘Online Advocacy – Social Media & Valuable Tools’

    Learnings In this webinar, Bettina Ryll , Gilliosa Spurrier-Bernard and Violeta Astratinei from the Melanoma Patient Network Europe will share learnings and best practices from their work in patient
  • A carer for family members with myotonic dystrophy talks about the challenges of diagnosis and living with this rare disease

    Nicky is a carer for six family members across three generations who have a diagnosis of myotonic dystrophy . Like many families, they had been living with the wide range of symptoms associated with
  • The research project for paediatric gliomatosis cerebri is already here!

    Some time ago we met Mónica , Izas's mum and president of the Spanish association of gliomatosis cerebri " Izas, la princesa guisante ". Her story is an example of courage, struggle and dedication.
  • We are looking for Share4Rare ambassadors!

    Adult rare disease patients and their family members become experts in finding medical information, supporting research initiatives and leading patient organizations. For the most ultra-rare diseases,
  • TREAT-NMD / EURO-NMD Neuromuscular Translational Summer Schools: showing all the dimensions of neuromuscular diseases

    The first Neuromuscular Translational Summer School took place in July 2018 in Newcastle upon Tyne, UK. The Summer School was the result of a collaborative effort between TREAT-NMD and EURO-NMD to
  • Tips for taking care of young caregivers. Let’s help those who help.

    Young and adult caregivers’ emotional and physical health are usually highly affected: anxiety, depression or feelings of isolation, lack of physical activity, unhealthy eating habits, etc. In this
  • 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
  • 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 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