A disease is rare when it affects fewer than 1 in 2000 people. Thera are 300 million people (3.5-5.9% of world population) with rare disease, which 72% of them are genetic diseases. Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers.
The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.
Rare Disease Day is the opportunity advocate for rare diseases as a human rights priority at local, national and international level as we work towards a more inclusive society.
Rare Disease Day is a great example of how progress continues to be made, with events being held worldwide each year. Beginning in 2008, when events took place in just 18 countries, Rare Disease Day has taken place every year since, with events being held in over 100 countries in 2019.