The 11th edition of Rare Disease Day 2018 takes place on February 28th, 2018 and to mark this International day of raising awareness for rare diseases, VASCERN will be attending the “Rare Disease Village”, organized by the French Rare Disease Networks (Filières de Santé Maladies Rares), at La Canopée des Halles in Paris, France.
Along with ERN-EYE and EuroBloodNet, VASCERN will represent the European Reference Networks (ERNs) at this event and will be available all day, providing information about the goals and activities of the ERNs. Brochures and leaflets on the ERNs, provided by the European Commission, will equally be distributed.
During this daylong event (10:00 AM-6:30PM), the public will have the chance to participate in various a activities including adaptive sport games (such as wheelchair handball), gentle gymnastics, and games related to nutrition and self-image. There will also be a workshop dedicated to clinical research, where both young and old alike can learn about the testing process of new drugs in a fun and interactive manner. In addition, a workshop dealing with the topic of “invisible” disabilities will give participants a chance to learn more about these unseen disabilities as well as contribute to the creation of a logo for invisible disabilities via a drawing contest.
To end the day, a conference on the theme of research (this year’s theme) will be held at the UGC cinema Les Halles starting at 6pm. This conference will feature presentations from various actors working in the field of clinical research.
We hope that if you are in the area that you will be able to attend! All Rare Disease Day activities worldwide can be followed on Twitter, as we will all be using the hashtags #ShowYourRare and #RareDiseaseDay.
For more information on this event (in French) click here
Read the official press release (in French) here
Join the event on Facebook here
Watch the official Rare Disease Day Video (available in English and 34 other languages) here