The World Rare Disease Day takes place worldwide on the last day of February every year. It was initiated to raise awareness about the rare diseases present in our world and the impact they have on the lives of the patients. The campaign was aimed at the general public across the globe to sensitise them towards these lesser known diseases and at the same time to get the policy makers, healthcare professionals and governments to activity participate in raising awareness about the same.
The Rare Disease Day was first launched in 2008 by EURORDIS and its Council of National Alliance and has now grown into a truly global event with hundreds of organizations participating. It brings together physicians, medical institutions and organizations, researchers and the patients to share their knowledge and experiences for a better understanding about these conditions.
The need to talk about these diseases and their impact is essential on a global scale as there is at least 1 in 20 people who will have lived with a rare diseases in their life. Despite the large number, the cure for a number of them does not exist and often go undiagnosed. The lack of awareness, medical training and general information about these diseases, often leads to the symptoms and signs of their development being ignored by everyone. World Rare Disease Day tries to rectify this by improving the know-how about these in the global population and getting the government to take some action.
The events that take place on this day are organized and taken forward by organizations who work on a local and national level to raise awareness for the rare disease community in their countries. The day now has thousands of events taking place across the globe and reaching hundreds of thousands of people thanks to the booming media coverage it receives.
Even though the campaign began as a European event, it has gradually progressed into becoming a global phenomenon, with countries like USA joining in 2009 and India in 2010, and having a count of 94 countries by the year 2018.
Some of the participating countries have taken this one step ahead and dedicated special days and years to the cause. For example, Spain declared 2013 as the National Year for Rare Diseases and conducted events through out to raise awareness for the same. India’s annual ‘Race for 7’ is a prominent event to mark this day. It is a 7km race that represents the 7000 rare diseases documented so far. The Indian Organization for Rare Diseases also conducts seminars and conferences to create an environment and platform for constructive brainstorming and analysis the latest rare diseases and the policies released by the Indian Health ministry. You can also make a positive impact with respect to this day by participating in these events and raising awareness about the same in your surroundings!