Rare Disease Day is almost here!
Rare Disease Day is an annual international observance held on the last day of February (February 28th or 29th) to raise awareness about rare diseases and their impact on patients' lives. Rare diseases are those that affect a small number of people in the population, typically fewer than 1 in 2,000 people. However, there are over 7,000 known rare diseases affecting an estimated 400 million people worldwide, making rare diseases a major public health issue.
Rare Disease Day was first observed in 2008 and has since become a global event, with more than 100 countries participating. The day is coordinated by EURORDIS (the European Organisation for Rare Diseases) in Europe and the National Organization for Rare Disorders (NORD) in the United States.
The main goals of Rare Disease Day are to raise awareness about rare diseases, to advocate for better access to diagnosis, treatment, and care for people living with rare diseases, and to promote research into the causes and potential treatments for rare diseases. On this day, various events are organized, including conferences, seminars, and awareness-raising activities, to help raise awareness about the challenges faced by people living with rare diseases and their families.
Rare Disease Day aims to give a voice to those affected by rare diseases and to encourage greater attention and action on rare diseases at the policy, research, and healthcare levels. The day provides an opportunity for patients, advocates, healthcare professionals, researchers, and policymakers to come together and work towards improving the lives of those affected by rare diseases.
