2023-05-30 00:00:45
- Although the WHO estimates that there are at least 7,000 rare diseases, in Mexico only 23 are recognized.
- This group includes all those that occur in less than five people per 10,000 inhabitants.
- If all the patients are added, it is estimated that there are 350 million people with a problem of this type worldwide.
After a long process, the full The General Health Council (CSG) approved the inclusion of 3 rare diseases to be recognized in Mexico. This seeks to increase research and support, in addition to offering treatments to affected patients.
What are rare diseases and how are they classified?
Based on the World Health Organization (WHO), the Rare diseases are those that occur in less than five people per 10,000 inhabitants. The figure may seem small and insignificant but it is not. If all the patients are added, it is estimated that there are 350 million people with a problem of this type.
To give greater visibility to this type of pathologies, the last day of February was designated as the World Rare Disease Day. This date was chosen because it is the only one in the entire year that changes when it is a leap year. In this way, the ephemeris works as a symbolic way of associating this rarity of the calendar with a special group of illnesses.
For its part, it is estimated that there are currently between six thousand and eight thousand pathologies that fall into this category in the world. Of these, 72 percent are of genetic origin, while 70 percent exclusively affect the pediatric population.
The 3 rare diseases that are now recognized in Mexico
Despite the above, in Mexico there are only 20 rare diseases that are recognized by the CSG. Although from now on three are added, which are the Unspecified hereditary familial amyloidosis, Duchenne muscular dystrophy, and spinal muscular atrophy.
Expand the @DeSalubridadlist of Rare Diseases
– General Health Council (@DeSalubridad) May 26, 2023
With this in mind, they are added to those that are already part of the official catalogue:
- Mucopolisacaridosis I Hurler
- Mucopolisacaridosis II Hurler
- Mucopolysaccharidosis IV Morquio
- Mucopolisacaridosis VI Maroteaux-Lamy
- Type I Gaucher disease
- Type II Gaucher disease
- Type III Gaucher disease
- Fabry’s disease
- Pompe disease
- turner syndrome
- spina bifida
- Cystic fibrosis
- Hemophilia
- Histiocitosis
- Congenital hypothyroidism
- Phenylketonuria
- Galactosemia
- Congenital Adrenal Hyperplasia
- G6PD deficiency, Glucose 6 Phosphate Dehydrogenase
- Homocystinuria
However, one of the biggest drawbacks is that in Mexico there are no official statistics. During 2022 an attempt was made to carry out the first registry of people with rare diseases but in the end the project was cancelled.
Despite the above, some estimates state that there could be between 4,550,000 and up to more than 7,670,000 patients with at least one of the known rare diseases.
For their part, only five percent of these types of conditions have an approved treatment option. Hence the importance of any action in favor of patients and their families, as well as doctors and health systems.
Also read:
These 3 rare diseases could be recognized in Mexico
Rare Diseases: 1 in 15 Mexicans could have one and not know it
Graphic of the day: The only 20 rare diseases that are recognized in Mexico
#Add #rare #diseases #recognized #catalog #Mexico