28 February International Day of Rare Diseases

Esta entrada también está disponible en: Spanish

Rare diseases are rare conditions in society whose level of incidence in the population does not exceed 0.05%, and also cause chronic or degenerative processes. According to international health organizations, the number of rare diseases exceeds 8 thousand, so when we add the number of people suffering from these pathologies, we obtain the impressive figure of 7% of the world’s population.

If we put these figures in context, we can see that a significant number of people suffer from some of these rare diseases. For this reason, in 2008 the European Organization for Rare Diseases (EURORDIS) established the last day of February as the international day of rare diseases.

This date was selected because, in leap years, the month of February has an additional day, in this way February 29 can be considered as a “rare day”, making a clear analogy to this type of diseases.

Rare diseases are a clear challenge for the general population, as in some cases very little is known about them, making it difficult to develop new treatments. For this reason, the World Day of Rare Diseases was born with the aim of sensitizing society to generate actions within the framework of a much healthier life.

What are the rare diseases?

As we have already explained, rare diseases are those that affect less than 0.05% of the population, and mostly have a predominant genetic factor that triggers them, causing chronic conditions that affect the muscular, endocrine and nervous system of the body.

Among some rare diseases we can mention the following:

• Goodpasture syndrome.
• Epidermolysis bullosa.
• Steinert’s myotonic dystrophy.
• Alport syndrome.
• Congenital defects of glycosylation.
• Elephantiasis.
• Osteogenesis imperfecta.
• Hyperphenylalanineemia.
• Prader Willi.
• Amyotrophic Lateral Sclerosis.
• Angelman syndrome.
• Progeria.
• Von Hippel Lindau.
• Marfan syndrome

In Toldos Guardamar we collaborate by making donations to Group 07 which is an NGO specialized in these cases, because we believe that it is necessary to give visibility to these and many other “rare diseases”, since it is essential to give voice to all those people who suffer them daily and fight to overcome them.

“Our philosophy is our identity” – Agustín Salvat.