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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
29 April 2019
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
25 April 2019
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
02 April 2019
Let’s make rare extraordinary! Welcome to Share4Rare
Rare diseases affect less than 5 of every 10,000 people, with 80% being children. Share4Rare is born from the need to connect and join patients with rare diseases from all over the world. Our greatest
27 March 2019
RareHacks: uniting experts to build the future of the rare disease community
What is RareHacks? RareHacks is a hackathon event that brings you the opportunity to apply data science tools , including machine learning and natural language processing algorithms, to a real
Quality of life
08 March 2019
Share4Rare: helping to tackle problems faced by parents of children with rare diseases
When your child is diagnosed with a rare disease — or he/she is still undiagnosed —parenthood becomes harder than expected. You face complete uncertainty as you probably know nothing about that
05 March 2019
Share4Rare Webinar V: "How to Detect & Tackle Pseudoscience"
Just as fake news seems to become an inevitable grudge whenever you look for news or information online, fake science is on the rise too, and it stirs up the rare disease community. Articles that are
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