Almost six years ago the European alliance of rare disease patient organizations (Eurordis) launched the very first Rare Disease Day – 29th of February – as a bid to merely raise awareness for the challenges faced by rare disease patients, families, health professionals, researchers, members of industry and government stakeholders.
A simple gesture which now has been joined by 56 countries, including all EU Member States, Croatia, Russia, Georgia, United States, Canada, Brazil, Japan, China, Australia and others.
Rare Disease Day participants are called to a show of hands – literally. At 12:00 GMT, all participants are asked to join and raise hands to demonstrate solidarity with rare disease patients around the world! Whether a dozen people in an office, 100 people at a conference or 1000 people at a public gathering – anyone can participate in this symbolic gesture that will show the world that the community is mobilized for people living with rare diseases and driven by the same objectives. Photos of any demonstration can be sent to the Rare Disease Day website where they are uploaded and displayed in a Photo Gallery.
Visit the Rare Disease Day website and find an activity taking place near you today. Your participation could make the difference!
Click the heading above to watch the introductory video or here.