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13 August 2019
Some ideas behind the technical design of Share4Rare
Having a black screen as your main tool of trade entails a number of things. One such thing is that you tend to be seen as a mere facilitator, someone whose work is limited to putting the ideas others
07 August 2019
What is it like to have a sibling with a rare disease?
Taking care of a loved one who is chronically ill, having a highly disabling pathology such as a rare disease, can be as rewarding as it is difficult and stressful . This kind of diseases entail for
25 July 2019
Share4Rare criteria for meaningful patient involvement in clinical research
Patient involvement in medicines development continues to grow, as all stakeholders involved in developing accessible medicines realize they should be involving the end customer - the patient - from
15 July 2019
Stories of the Share4Rare hackathon: helping patients and families to face rare diseases
Share4Rare’s first RareHacks hackathon was celebrated on July 5-7th in Barcelona . In total, 45 participants were involved in building an innovative chatbot to solve the challenge regarding the
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
08 July 2019
Did we need to reinvent the wheel? Why Share4Rare adopted a layered approach to user interaction
It was one year ago, in the summer of 2018, when I attended my first meeting of the Consortium of the Share4Rare project . The project had been going on for a while and the foundations were laid, but
21 June 2019
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
06 June 2019
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 —
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
13 May 2019
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)
07 May 2019
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
30 April 2019
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
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