QCOSTARICA – In Costa Rica, approximately 359,000 people suffer from a rare or orphan disease, mostly genetic in origin, according to data from the Caja Costarricense de Seguro Social (CCSS).
Most rare diseases are present throughout the person’s entire life because they cannot be so easily diagnosed or treated quickly.
In addition, they have a high mortality rate, but low prevalence and generally have a very severe chronic course, with multiple motor, sensory, and cognitive deficiencies.
Given this scenario, and within the framework of the Rare Disease Day in Costa Rica, to be celebrated on February 28, experts call to raise awareness about the urgency and right they have to receive adequate and specific care that improves their quality of life.
“It is essential that patients with rare diseases have medicines that are strictly prepared to best care for their condition,” commented Ana Violeta Ovares of Preparaciones Magistrales Farmacéuticas (PREMAFARMA) and representative of the Costa Rican Chamber of Health.
In the world, there are more than seven thousand rare and orphan diseases, which translates into 8% of people affected, according to information from the World Health Organization (WHO).
The challenge that countries have to combat these diseases that mainly affect the child population, and where currently the lack of financing continues to be a problem.
Estimates vary on exactly how many rare diseases there are, in part because countries define these diseases differently.
In Costa Rica, the screening test that is carried out on newborns allows the detection of only 29 of these diseases.