Today, February 29, for being a rare day that occurs every four years, the World Rare Disease Day under the motto "Get vaccinated against indifference", with the intention of claiming international solidarity towards families with infrequent pathologies.
Those known as rare diseases They are named for their low incidence in the population. It is believed that there are between 5 thousand and 8 thousand and are those that affect less than five people per 10,000 inhabitants. In Spain they affect three million people.
Precisely because it is rare, its diagnosis is difficult and most of the time it takes several years to find it, with the physical and psychological wear that this implies, both for the patient and for his family.
It is very likely that you will not hear diseases such as the devastating Sanfilippo syndrome, Netherton's disease or "red children", Angelman syndrome or Kawasaki syndrome. Diseases with strange names but suffered by people who suffer daily.
This year, the World Rare Disease Day It is celebrated in a hopeless climate because of the cuts in health that are already affecting them. 37% of patients say they have noticed "a significant deterioration" in health care, experiencing difficulties in receiving their usual treatment or in accessing rehabilitation.
It is a long way to go for people with rare diseases and their families to make changes. The Spanish Federation of Rare Diseases requests that the designation of centers, services and reference units be extended, the "effective care" of those affected throughout Spain be guaranteed, access to treatments is improved and that patients with rare diseases do not pay, like pensioners, drugs.
It is intended to position rare diseases as a social and health priority, something essential to improve the quality of life of people with rare health problems.
