• 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
  • Share4Rare toolkit for rare advocacy

    What is in it This practical kit shares best practices and tools that advocates have used to support innovation and offers practical advice on how to make a difference for rare disease patients. With
  • 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
  • Share4Rare Webinar VI: "How your data is processed in Share4Rare"

    What we will talk about in this webinar Alex Perera , from the Polytechnic University of Catalonia , will explain how Share4Rare follows the European privacy regulation for the collection, usage and
  • 10 reasons to join Share4Rare

    The use of internet as a health information source has increasingly grown in the last decades. Expressions like Dr. Google or google it , referring to the search for information aimed to clarify our
  • Share4Rare: game changer in rare disease research

    Share4Rare enables rare disease families around the world to connect, offering a secure social network that creates a safe haven for talking to peers and clinicians. The multi-tier validation
  • A new nomenclature for Limb Girdle Muscular Dystrophies (LGMD)

    The 229th ENMC international workshop, entitled ‘Limb Girdle Muscular Dystrophies – Nomenclature and reformed Classification’ took place from the 17th to the 19th of March 2017 in Naarden (The
  • What causes Amyotrophic Lateral Sclerosis (ALS)?

    Amyotrophic lateral sclerosis: a patient’s journey «It was a sunny Sunday morning in the middle of September. Amy was playing in the local playground under the watchful eye of her parents, trying to