The “Rare Diseases Day is the most important event in the world for rare patients, family members, medical and social workers in the sector..
On the occasion of this day, the world community of rare patients is sent to join forces to turn the spotlight on the theme of rare diseases and the millions of people affected by it.
Now in its tenth edition, the Rare Disease Day will try to attract public attention to the theme of solidarity in the field of Rare Diseases. This year’s slogan “Rare Diseases Without Borders” reminds us that combating diseases that affect a small part of the population in every country and for which skills are scarce and disseminated, requires cross-border cooperation.
There are probably more than a hundred million people in the world affected by a rare disease. Breaking down barriers for rare diseases is essential for all rare patients. The Rare Disease Day is the time to demonstrate the most sincere and constructive solidarity.
There are over 6000 recognized rare diseases afflicting millions of people and their families in Europe and around the world. There are many barriers that arise and imprison rare patients and those who assist them. It is the feeling of feeling alone, isolated, alienated, forgotten what prevails. Very strong frontiers of a territory that appears invisible to most people, but which hides life, hopes and opportunities. Breaking down every barrier and bypassing every frontier will help to find common solutions that leave no single rare patient anymore.
The site of the Rare Diseases Day www.rarediseaseday.org offers general information on the awareness campaign, ideas on how to participate, provides tools to download and allows patients to share their story by sending photos and videos. The site also contains a calendar of national and local events that will be updated with new events as other countries join the event.
As in previous years, we invite you to join the Rare Disease Day social media discussion and share it with your affiliates, your friends and your contacts. The page Twitter of the Rare Disease Day,, the Flickr image gallery, the YouTube channel, the Facebook group, they are excellent channels to create attention around the Rare Disease Day!
You can send questions and comments to the email email@example.com