What is a Rare Disease?
It is considered a rare disease with an incidence in the population less than 5 per 10,000. Thus, a disease is considered rare if it affects less than 185,000 people in the European Union. In Spain are those that affect fewer than 20,000 people for a particular disease.
It should be noted that there are more than 5,000 rare diseases and within each there is a wide range of manifestations.
Apart from the specific circumstances of each disorder, people with rare diseases suffer from other problems:
* Ignorance of the origin of the disease, confusion and disorientation at the time of diagnosis.
* Social rejection and loss of self esteem.
* Misinformation about care, possible complications, treatments, and technical assistance to facilitate their life.
* Isolation and lack of contact with other affected persons.
* Disinformation on specialists or medical centers.
* Lack of protocol for the disease.
* Lack of financial aid.
* Lack of legal coverage to promote research in genetics, clinical trials and new treatments.
* Lack of specific medications to treat the disease.
Posted in Health Info | 
Tags: Origin of the Disease, Particular Disease, Rare Cisease, Specific Circumstances