On listening to the word "rare diseases" many people think -at least at the beginning- that it consists of a problem that affects a reduced group of people. This idea is a mistake.
Essentially, the word "rare diseases" only highlights the rarely absolute frequency of the complex and heterogeneous mosaic of the nearly seven thousand diseases catalogued under this common noun, being the eighty per cent of them from congenital origin and having low prevalence: less than five cases per ten thousand people.
In Spain, it is calculated the approximate existence of over three million people affected by some rare disease; in the European Union there are nearly thirty million.
As you know well, these diseases are usually serious, chronic and produce specialized and long lasting care in people suffering from them.
People with rare diseases and their families are a collective with specific needs in social and health covering. It has been proved that they consist of a wide collective of people with specific difficulties in the access to diagnosis and biological tests, medical resources, pharmacologic treatments, social and school care among other services.
There is the completely necessity of putting on the same level these people’s rights with the ones of people with more common diseases and compensate them for the care shortages they receive, guaranteeing equity, quality, safety and efficiency of the given services.
A lack of proper attention according to described problems has implied a general shortage of social and health resources for the treatment, care and support to these patients and their families. Nowadays, less than one thousand of these diseases have the benefit of minimum scientific knowledge and, essentially, these are "the most frequent" among rare diseases.
As a first step in this way this Ministry of Health and Social Policy has founded this National Reference Centre for People with Rare Diseases and their Families, running by Imserso, in order to get better care for these people and their families.
© Instituto de Mayores y Servicios Sociales (Imserso) 2009
CRE Enfermedades Raras (Creer) de Burgos