On Thursday, the federal government released (3) the Unified Health System (SUS) handbook for people with rare diseases. It is estimated, according to the Ministry of Health, that there are about 13 million people in Brazil who suffer from some rare health conditions. Worldwide, there are about 300 million rare species and about 6000 to 8000 different types of known diseases. Rare diseases are health conditions, usually chronic, with low prevalence in the population.
“These people with rare diseases have diverse care needs, and they require ongoing care from multidisciplinary teams at all levels of health care, as well as family support, which is critical,” said the Ministry of Health’s Specialized Care Secretary. Maíra Botelho, during the launch of the brochure, at a ceremony at the Palácio do Planalto. The ceremony was attended by President Jair Bolsonaro and First Lady Michele Bolsonaro, as well as ministers, authorities and people with rare diseases. The ceremony also marks the International Day of People with Rare Diseases, which is celebrated on the last day of February.
The Rare Notebook, as it has been called, guides patients and family members who seek specialized care in SUS. According to the Ministry of Health, in addition to bringing the main signs and alerts that may indicate the presence of a rare disease, the document provides information on treatments and tips for a healthier life. The brochure will record information about health care, education, and multidisciplinary care services, and will monitor the patient throughout their life.
“Cadarneta do Raro is another delivery of the Ministry of Health to guide patients, their families and caregivers,” said First Lady Michelle Bolsonaro, who helps articulate the agendas of people with rare diseases and disabilities.
“My mission from the beginning was to contribute to shedding light on people with rare diseases. In the past three years, we have changed the reality of rare diseases in this country,” he added.
The Minister of Health, Marcelo Quiroga, said that since 2019, the ministry has invested about R$3.8 billion in resources to help patients with rare diseases in SUS. The money, according to the file, was used to fund teams in hospitals, newborn screening, and new diagnosis and treatment protocols for diseases.
President Jair Bolsonaro, in a short speech, praised the work of the teams working on public policies targeting people with rare diseases in the country. “Today, I also feel stronger in my ability to collaborate with people affected by these rare diseases,” he said. “There is no greater satisfaction in people’s lives than being able to contribute and collaborate with others.”
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