One of every five people affected by rare diseases takes up to 10 years to be diagnosed.

-rare neurological diseases are home mainly in children, although they occur at all ages, and are rare because of its low frequency and its diagnostic difficulties and treatment

– it is estimated that you between 6% and 8% of the world’s population is affected by these diseases. In Spain, more than 3 million Spaniards suffer any of these ailments

– therefore the Spanish Neurology Society calls for more resources to advance research and treatment of rare diseases

Madrid, February 2010- today marks the world day of rare diseasesthose diseases with danger of death or chronic disability who have a low rate, less than 5 people per every 10,000 inhabitants, following the definition of the European Union. In addition, present many difficulties in diagnosis and follow-up, that when assessing a patient first symptoms are discarded diseases most frequently. In this sense, it is estimated today, one in five people affected by rare diseases takes up to 10 years to be diagnosed, hindering the prevention and treatment of disease. During this long process, they may receive inaccurate diagnoses and lack of knowledge with society in general and even health workers makes feel misunderstood, isolated in health care ” says the DRA. Maite Mendioroz, Member neurologist of the Committee of rare diseases of the society Spanish of Neurology (SEN).

Although its origin is unknown, its inception occurs during childhood and due to the small number of people affected, pose difficulties in the investigation that they lack most effective treatments to between 6% and 8% of the world’s population and more than 3 million people in Spainthey suffer from any of these ailments. It is why from the Sociedad Española de Neurología (SEN) consider necessary the existence of greater means and resources to advance in the research of these diseases. In addition to this, as asserted by the DRA. Mendioroz currently, there are only treatments available to treat the symptoms, and the few that are designed to modify the evolution of the disease, require bureaucratic processes sometimes incomprehensible for the patient ”.

Today, there are neurological diseases such as the Commonwealth, with 6,000 affected in our country, that Yes are being investigated, but there are many others that do not. These include neuromuscular diseases (Duchenne, Dystrophies, ELA), diseases by metabolic disorders, mitochondrial diseases (leucodistrofias), the family spastic paraparesis, bone and brain malformations, the malignant epilepsy of childhood, espinocerebrales Lazo and movement disorders such as generalized distonias, idiopathic or Korea of Huntington.

But fortunately, this approach is changing, and patients and affected families are being more and more attention of health policies in Western societies ” concludes the DRA. Mendioroz. Thus, our country, last year launched the National Plan for rare diseases. Behind this turn we find the effort of patients associations have done for years, the pharmaceutical industry seeking new areas to expand, the medical interest in the study of these unknown ” diseases and the growing recognition by health institutions of the need to address in a comprehensive manner to these patients. It should be recalled that, because of their special characteristics rare diseases affect not only the individual but his entire family.