International Rare Disease Day

The doctor cannot diagnose the disease This is the reality for many rare disease patients Lack of scientific knowledge and quality information about the disease often leads to delays in its diagnosis Without adequate quality of medical care and difficulties in accessing treatment and care, the patient faces a heavy social and financial burden Studying this problem could lead to the identification of previously unknown diseases and help improve understanding of the rare disease This will allow doctors to make the correct diagnosis and provide the patient with comprehensive information about his disorder International Rare Disease Day is celebrated around the world on the last day of February every year The main objective of the day is to raise awareness among the general public and those in power who decide to study little-known manifestations of illnesses and their impact on the life of the patient The campaign aims to raise awareness among policymakers, government agencies, industry, researchers, healthcare professionals and those with an interest in little-known diseases Rare Disease Day was first launched by EURORDIS and its National Alliance Council in 2008 The campaign began as a European event and gradually spread throughout the world Some countries, such as Spain, have decided to raise global awareness of little-known diseases by declaring the entire year National Rare Disease Year For a dozen years, thousands of events around the world have been dedicated to this day, involving hundreds of thousands of people During the last week of February, thousands of people from around the world will come together to advocate for more research into rare diseases In recent years, the number of foundations and organizations conducting such research has increased significantly They do not want to stop there, but constantly find the necessary funds to conduct independent or partner research projects Innovative approaches to rare disease research will benefit not only those suffering from the disease, but also the general public