The Ministry of Health launched, this Tuesday (31), a new mascot, “Rarinha”, for actions on rare diseases in Brazil.
The mascot, created with the symbol of the little foot test, will have the mission of disseminating information about the approximately 8,000 rare diseases known to date. In Brazil, 6 of them are diagnosed by the heel prick test offered by the SUS – a number that will be expanded in 2022 (see details below).
The launch was attended by the minister of Health, Marcelo Queiroga, the secretary of Labor Management and Health Education, Mayra Pinheiro, and the executive secretary of the National Council of Municipal Health Secretariats (Conasems), Mauro Junqueira.
“We need a public policy that can sustainably serve rare people. In a large country like Brazil, we need to engage in research to take care of these people,” said the minister.
Photo shows the minister of Health, Marcelo Queiroga, during the launch, this Tuesday (31), of the folder’s new mascot, ‘Rarinha’, which will appear in actions on rare diseases. — Photo: Reproduction/Twitter Ministry of Health
The “Rarinha” will be part of the Educommunication Actions in Rare Diseases program of the folder.
“The Ministry of Health proposes training, reference centers to identify and treat these people is a moment of great satisfaction. This will help a lot in the identification and correct referral of these patients,” said Junqueira.
It is considered a rare disease, according to the Ministry of Health, the one that affects up to 65 people per 100,000 individuals. The exact number of rare diseases is not known; 80% of them occur due to genetic factors, according to the ministry.
In Brazil, 13 million people live with some type of rare disease. One of them is amyotrophic lateral sclerosis (ALS), which affected the British physicist Stephen Hawking, who died in 2018.
In May, the federal government sanctioned a law that expands the list of rare diseases investigated by the heel prick test carried out by the SUS (Unified Health System). The new legislation will take effect in May of next year.
O foot test it is a quick test, done between the 3rd and 7th day of the newborn’s life, in which droplets of blood are collected from the baby’s heel. He is important because the diseases you can identify do not cause symptoms or show signs when the child is born – but can cause serious damage health, including neurological development.
The text predicts that the new exam diagnoses will be implemented in 5 steps:
- First step: congenital toxoplasmosis and other hyperphenylalaninemias, in addition to the other 6 diseases already investigated today: phenylketonuria, congenital hypothyroidism, sickle cell disease and hemoglobinopathies, cystic fibrosis, congenital adrenal hyperplasia and biotinidase deficiency.
- Second stage: galactosemias, aminoacidopathies, urea cycle disorders, fatty acid beta-oxidation disorders.
- Third step: lysosomal diseases.
- Fourth step: primary immunodeficiencies.
- Fifth step: spinal muscular atrophy (AME, a disease for which a drug already exists, known as “the most expensive drug in the world”).