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
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
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
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
Rare Disease Day – Make your voice heard!
Rare Disease Day is an international event whose objective is to raise awareness, improve treatment access and provide visibility for individuals suffering from a rare disease. Originally established
Share4Rare: facing patient isolation by boosting research on rare diseases
Having a child with a rare disease is never easy. It is hard to know what the future holds, there are only a few people like your child to learn from and, to make things worse, most of them are
How to build an infrastructure for translational research
On 11th December 2018, Rebecca Leary, EURO-NMD Project Manager and member of the TREAT-NMD Secretariat and Cathy Turner, DMD Liaison and TACT Coordinator at the John Walton Muscular Dystrophy Research
Share4Rare had its place in the Informative Session for Patients and Families with Neuromuscular Diseases at Hospital Sant Joan de Déu Barcelona
Last Saturday, October 27th, the Share4Rare project was presented at the 5th Informative Session for Patients and Families with Neuromuscular Diseases that is annually celebrated at Hospital Sant Joan
How to go from a good idea to a great one: a case study in co-creation
The digital environment is shaping the way we interact and interpret the healthcare environment. It has the power to erase borders, overcome old challenges and bridge the gap between very different
Poster prize for Share4Rare!
Share4Rare received an "Innovative project" prize on their poster the at the Better Medicines for Children Conference in Brussels! This conference is organized by the European Forum for Good Clinical
How to guarantee quality in translational research for neuromuscular diseases
It is not easy to go from basic drug research to clinical trials on humans, and for rare neuromuscular diseases the scenario is even harder. Besides, not always all the projects arrive to the human
Patient-powered co-design workshop 3
A few weeks ago the third and final Share4Rare co-design workshop was held in Barcelona. This activity was enabled by The Synergist and it included participants from 7 different countries. What the