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Ignorance of the Rare diseases, the lack of support and the indifference of many people towards the problem of rare pathologies directly affect those affected by Rare Diseases throughout the world.
To stop this situation, and on the occasion of the celebration of World Rare Disease Day, we want to join the slogan of the ERDF campaign: Vaccinate against indifference.
This indifference is precisely what people with these 'rare diseases' suffer, which are characterized by low prevalence conditions, that is, affect fewer than 1 in 2,000 newborns. Today, an estimated 8 percent of the world's population suffers from a 'rare disease'. Most of these rare diseases are difficult to diagnose and follow.
An important percentage of these diseases are of genetic origin, they are, for example, the so-called 'innate errors of metabolism', which include more than 500 well-defined rare diseases; others are autoimmune, toxic, infectious, congenital malformations, cancers, etc. In addition, rare diseases are distinguished by having another common characteristic and that is that they are potentially fatal or disabling in the short or long term. For this reason, many associations are calling in unison for a global approach with special and combined efforts, thus preventing morbidity and premature mortality with an improvement in the quality of life.
We cannot do anything or anything else, as long as neither me nor mine touches us ... are some examples of attitudes that immobilize the progress of science and other sectors in the face of this problem, causing 76 percent of people Among which are many children, as many of them are genetic, with these pathologies they feel discriminated against because of their disease.
To put an end to this 'epidemic of indifference', ERDF, in collaboration with the European Organization for Rare Diseases (EURORDIS) and other Rare Diseases organizations, are calling for urgent measures to improve the lives of those affected. The objective is to position rare diseases as a social and health priority. The reason is that the lack of information and social ignorance of these diseases causes situations such as that the average diagnosis for these pathologies is 5 years or that 35 percent of the deaths of children under one year are due to these pathologies.
Marisol New. Editor of our site
You can read more articles similar to Rare Diseases. Vaccinate against indifference, in the category of Childhood Illnesses on site.