Rare Disease Day is an annual global event observerd on the last day of February. The purpose of the event is to raise awareness worldwide about rare diseases. Each year awareness raising events take place in each participating country. Dozens of organizations partner each year to coordinate the events. Click here to find events in your area.
Rare Disease Day is the perfect occasion to educate and remind people that rare diseases need special attention. Rare diseases are defined as being life-threatening or chronically debilitating, with a low prevalance but a high level of complexity. Patients with these rare deseases (and their families) can feel isolated and vulnerable since their condition is not a household name like other diseases. This lack of recognition leads rare diseases to become the 'orphan' of health care systems without research funding. A lack of research many times leaves patients without a proper diagnosis or viable treatment options.
Rare Disease Organizations:
NORD (National Association of Rare Diseases)
Rare Disease UK
Rare Disease Europe
