Czech Republic presents a Call to Action on rare diseases at the Expert Conference
Several European politicians and technicians attended this conference where the Czech government committed to push on a European action plan on rare diseases, presenting a Call to Action also endorsed
The EMA launches a public consultation on registry-based studies
A few weeks ago we published a blog explaining what a patient registry was. These databases enclose quantitative and qualitative data about patients who affected by a particular condition, like for
Lessons learned: Share4Rare’s new Digital Informed Consent
All around the globe, 2020 has brought with it a lot of downs. However, it has also brought some very valuable ups, mainly in the form of lessons learnt and powerful insights into what we are capable
FEDER Rare Disease Information and Orientation Service (SIO): building bridges to improve the lives of the patients
For two decades, the Spanish Federation of Rare Diseases (FEDER) has been giving voice to more than 3 million people who live with a rare pathology in Spain. At the present time, the association
Share4Rare’s most frequently asked questions
Over the last year, Share4Rare has gone from being merely an idea to being home for over 1,000 users pushing together against rare diseases. And we expect this to be only the beginning: with the first
Asia, Latin America and Europe unite and acknowledge the need for a global strategy in the field of rare diseases
On October 19th to 21st, the APARDO summit joined together patient advocates from 17 countries around the world, and its goal was to share all the current worldwide rare disease scenarios and to move
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