What are the rare diseases in Mexico

The last day of the second month of the year commemorates the World Rare Disease Day. In this sense, it February 28 is dedicated to recognizing the existence of those conditions which, by their nature, afflict a small number of people compared to the rest of the population and to be able to guarantee access to health services for those who suffer from it by promoting public policies.

According to the General Health Law, in the country, a rare or orphan disease is considered to be the set of conditions that less than five people per 10,000 inhabitants sufferi.e. with a prevalence rate lower than the 0.05 percent. Another of its characteristics is that it treats chronic, serious, disabling and progressive conditions.

In order to improve its detection and treatment, health authorities, academics and civil society organizations in the country have created a national register of rare diseases. According to the information available up to the year 2022, the list is composed of 20 conditions among which stands out the Turner syndrome, cystic fibrosis, hemophilia, spina bifidaamong others.

Over the past five years, the General Health Council (CSG) has gradually detected various conditions that have been added to the tabulation. And it is that in the The register in force until 2017 provided for 14 conditions, but the figure rose to 20 the following year, which maintained the reduction made last year.

– Mucopolisacaridose I Hurler.

– Mucopolysaccharidosis II Hunter.

– Mucopolysaccharidosis IV Morquio.

– Mucopolisacaridose VI Maroteaux-Lamy.

– Type I Gaucher disease.

– Type II Gaucher disease.

– Type III Gaucher disease.

– Fabry’s disease.

– Pompe disease.

– Turners Syndrome.

-Spina bifida.

– Cystic fibrosis.

– Hemophilia.

– Histiocitosis.

– Congenital hypothyroidism.

– Phenylketunoria.

– Galactosemia.

– Congenital adrenal hyperplasia.

– Deficiency in G6PD, Glucose 6 Phosphate Dehydrogenase.

– Homocystinuria.

Currently, according to the Center for Rare Diseases Network Biomedical Research (CIBERER), there are between 6,000 and 7,000 orphan diseases in the world. These conditions are believed to afflict about 300 million peoplealthough not all of them are taken into account in the lists established by the governments of each country.

According to the Ministry of Health, not all diseases are rare in all regions of the world. In this sense, even if there are people who suffer from a disease considered on the CIBERER list in the national territory, it cannot be taken into account in the registry if it does not comply with the current operational definition.

“Rare disease status may vary over timeas well as depends on the geographical area considered. For example, for years AIDS was considered an extremely rare disease, then it became rare and now it is an increasingly common disease in certain populations,” the Mexican health authority said in a statement. .

The issue of rare diseases has become more relevant with the appearance of the pandemic of COVID-19. Because people with these diseases are at risk of suffer further complications In case of having this respiratory disease, the authorities have announced the creation of a national census of patients with rare diseases.

The initiative was announced in 2021 and its aim was to improve case detection, as well as the implementation of treatments and to promote rare disease research in the country. That year, the Ministry of Health (SSa) recognized that there is under-reporting of casesbecause for every patient diagnosed, there may be seven more undetected.

Despite the estimate, the census has been canceled and has not been reactivated by the authorities. Likewise, the update for the year 2023 has not been disclosed and if other conditions can be included in the next list.