The “Rare Disease Day” campaign has reached its 8th edition this year, on February 28th, bringing once more, to public attention, the topic of rare diseases as a subject of medical, political and institutional concern. The initiative was founded by EURORDIS and its Council of National Alliances in 2008, triggering, ever since, a series of related events all around the globe, fastly turning from an European campaign to a world-renowned advocacy event that stands for dissolving ignorance and empowering collaboration for the better understanding and treatment of rare diseases. “Rare Disease Day” has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
This year’s theme, “Living with a rare disease”, makes reference to and tries to bring to light and to public appreciation the efforts made by rare disease patients, by their families and friends to cope. The slogan Day-by-day, hand-in-hand of the Official Rare Disease Day 2015 Video evokes the solidarity between families, patient organisations and communities.
CVBF welcomes this initiatives by becoming a friend of Rare Disease Day and showing its support on its official website.
We proudly join the “Rare Disease Day” manifesto and dedicate all our efforts to improve the healthcare system, also to search, test and provide better treatment and a better handling of these rare diseases.