Showing posts with label Rare Illness Day. Show all posts
Showing posts with label Rare Illness Day. Show all posts

Rare Disease Day - 28 February

Rare Illness Day is a day marked on the last day of February (i.e., usually on February 28 and once every four years on February 29). This day is designed to raise awareness of the existence of rare diseases and improve access to medical care and representation for people with rare diseases and their families.

Rare Diseases Day was founded in 2008 by the European Organization for Rare Diseases (EURORDIS). According to the organization, the treatment of rare diseases is not sufficient as well as the social networks to support people suffering from these diseases and their family members.
A rare disease is also called an "orphan disease" - a disease for which no resources have been invested over the years to research it and develop vaccines and drugs against it, because in science most of the time and resources are invested in more common diseases in the population. Rare diseases are most often complex genetic diseases, and according to the World Health Organization there are more than 5,000 types of such diseases.
All the rare diseases affect about one percent of the world population. In the EU the definition of the rare disease is its existence in one person out of 2,000 people. In the US the disease is rare if it is present in one in 2,500 people.

Diagnosis of rare diseases is difficult and takes longer than common diseases, because many times the existing symptoms are suitable for common diseases and because of misdiagnosis, the treatment is not appropriate and the patient suffers more. The remedies for rare diseases are usually not in the health basket because too few sick people need them.
Examples of rare diseases: Fabry disease, Morquio syndrome, Pompe disease.
Rare Disease Day

February 28 is also Chocolate Souffle Day and Tooth Fairy Day
February 29 is also Leap Day

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