Quito buildings lit up for World Rare Disease Day

Last Monday, February 28, as a show of support and sensitivity to the situation experienced by rare disease patients, several public buildings in Quito were lit up with colors alluding to the World Rare Disease Day.

The National Assembly, the Municipality of Quito, the Financial Platform of the South and the streets of Galápagos and Cuenca, were illuminated to remember this day and draw the attention of the authorities to their condition.

Last Thursday the 24th, the National Assembly signed the “Declaration in favor of Rare Diseases” together with authorities and social groups of patients with these pathologies.

The diagnosis of rare diseases begins with the correct primary care

It is an instrument that reaffirms the commitment of legislators, within the framework of their powers, for the protection and defense of the rights of patients with these pathologies, so that they have access to comprehensive medical care that guarantees diagnostic tests and Timely medical treatments with continuity and quality.

According to Carmen Mayorga, president of the Manitos de Amor Foundation, patients with rare diseases do not have comprehensive support from the National Government, since many of their medications are not included in the basic list and they do not have a timely diagnosis. In some cases, the lack of experts means that many people die without a clear diagnosis and without receiving medication, in many cases this happens in children who do not exceed 13 years of age.

The Manitos de amor collective provides social support to children suffering from Mucopolysaccharidosis VI (Marateaux-Lamy Syndrome) and Mucopolysaccharidosis IVA (Morquio Syndrome).

At the signing ceremony in the National Assembly, it was also asked to pay tribute to the girl Abigail Guamingo, 13 years old, a patient with Mucopolysaccharidosis, who died on February 11 without receiving her medicine.

World Rare Disease Day is commemorated as part of an official global campaign to raise awareness of these pathologies. The objective is to reach the authorities and citizens in general with an awareness message, so that they recognize that these patients are not invisible, and that they must work for equity in social opportunities, medical care and access to timely diagnoses and therapies. to ensure a better quality of life.

Catastrophic, rare or orphan diseases, according to the Ministry of Health

The Rare diseases are those that occur in fewer than five people per 10,000 inhabitants.. In the world there are more than 7 thousand types of these diseases. They mostly affect the quality of life of patients due to the loss of autonomy due to the chronic, progressive, degenerative and often life-threatening aspects of the disease.

In the country, the public health policy in the Constitution of the Republic recognizes and guarantees the right to specialized and free care for these patients. However, the reality is that this does not occur in a significant number of cases. (I)