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10 July 2019
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
20 May 2019
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
17 May 2019
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
10 May 2019
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
08 May 2019
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
19 October 2018
The POWER-tool: a new effective method that helps involving patients in clinical trial design
Research on rare diseases is often difficult to perform mainly because there are only a small number of cases to study, resulting in a vaguely representative statistical analysis of the data. For
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