This is I.T, (Inconvenient Truth)!!! – Rare Disease Day

This is I.T, (Inconvenient Truth)!!! – Rare Disease Day

Rare disease day is observed annually on the last day of February. The aim is to raise awareness about various conditions that would otherwise remain in the dark.

2016 marks the ninth anniversary of the campaign, and this year, its focus is on the millions of patients worldwide affected by one of more than 6,000 rare diseases that exist.

With a strong "Join us in making the voice of rare diseases heard", the organizers hope to make people understand, through the voices of the patients, what it is to live with such illnesses and what can be done to help.

What is a rare disease?

Also known under the name "orphan disease", the definition of a rare disease vary from a region to another. In the US for instance, a disease is considered rare when 200,000 Americans or fewer suffer from it (one in 160 people). In Europe, rare diseases refer to any condition that affects 1 in 2,000 persons.

In both cases, it affects a proportion of the population so small that very little is known about the disease and very little research is carried out.