With the objective of raising awareness in society about the special situation on patients' lives and improving access to treatment, Rare Diseases Day is celebrated on Thursday in Cuba and the world.
Established in 2008, the reason for its creation according to the European Organization for Rare Diseases (EURORDIS) is to assist the insufficient curative method that exists for many of these sufferings, as well as the lack of social media to support patients and their families.
The date for its celebration was February 29 for being a rare day. Since then, the activities are carried out every February 28 in the non-leap years.
The slogan for the 2019 event is 'Bringing health and social care'. It aims to improve access to medical representation of patients with rare diseases and their families.
A number higher than 300 million people worldwide are affected by more than 6,000 rare diseases, each of which has an impact on daily life, including the need for a daily care routine.
According to a European Union study, these illnesses are characterized by low prevalence and among the most common are: Brugada syndrome, Guillian-Barre syndrome, familial melanoma, hereditary autism, as well as scleroderma. / PL