May 02, 2022

notebook of the rare

The “Caderneta do Rare” is an initiative of the Ministry of Health to follow the trajectory of the person with a rare disease.

According to the World Health Organization (WHO), it is estimated that approximately 300 million people live with rare diseases in the world. In Brazil, there are 13 million people, 75% of whom are children. Diagnoses can often be performed late, negatively impacting their quality of life.

Diseases considered rare affect up to 65 out of every 100,000 individuals, according to the WHO. The Ministry of Health recognizes around 7,000 rare diseases, 80% of which are of genetic origin and 20% of infectious, viral or degenerative causes. Some examples of rare diseases are multiple sclerosis and Duchenne muscular dystrophy.

According to the Ministry, “This booklet provides guidance on care for people with a rare disease so that they can access diagnosis and treatment more quickly and safely. It also provides information on the rights and duties of rare children and parents or guardians, on healthy eating, on vaccines, on oral health and on developmental milestones, and provides information on access to equipment, social programs, guidelines and education.”

To publicize the initiative, the Ministry of Health created the Rarinha mascot with the heel prick test symbol, capable of identifying up to 50 diseases.

More information: https:// www.gov.br/saude/pt-br/composicao/sgtes/educomunicacao-em-doencas-raras/caderneta-do-raro

Rare booklet for download: https://www.gov.br/saude/pt-br/composicao/sgtes/educomunicacao-em-doencas-raras/caderneta-do-raro/arquivos /booklet-doencas-raras_24-02-2022-2.pdf