This Thursday (3), the Federal Government, through the Ministry of Health, launched the “Cardeneta do Raro”, a document that will include information from first care, diagnosis and registration of medical services, education, multidisciplinary care and of people with rare diseases.
In a press conference for the Ceremony alluding to the World Day of Rare Diseases, in BrasÃlia, the Minister of Health, Marcelo Queiroga, said that the government, under the leadership of the president, since 2019 has invested around R$ 3.8 billion in health care. to rare diseases.
Also present were President Jair Bolsonaro and First Lady Michelle Bolsonaro.
Cardnet of the Rare
The Rare Notebook, as it was named, serves to guide patients and family members who seek specialized care in the SUS. According to the Ministry of Health, in addition to bringing the main signs and alerts that may indicate the existence of a rare disease, the document provides information about treatments and tips for a healthier life.
The booklet will record information about care in health, education and multidisciplinary care services, and will serve to monitor the patient throughout his life.
The Minister of Health, Marcelo Queiroga, said that the ministry has invested, since 2019, about R$ 3.8 billion in resources to assist, in the SUS, patients with rare diseases. The money, according to the folder, was used to fund teams in hospitals, newborn screening, diagnosis and new protocols for the treatment of diseases.
Rare diseases in Brazil
Rare diseases are special conditions that affect a small proportion of people and most cases are due to genetic factors.
The World Health Organization (WHO) considers a rare disease to be one that affects up to 65 people in each group of 100,000 individuals. It is estimated that in Brazil, at least 13 million Brazilians live with some of these diseases.
Worldwide, there are about 300 million rare and about 6,000 to 8,000 different types of known diseases. Rare diseases are characterized as health conditions, usually chronic, of low prevalence in the population.
* With information from Agência Brasil
Source: CNN Brasil
