Brasília – The Senate’s Committee on Science, Technology, Innovation and Information Technology (Comissão de Ciência, Tecnologia, Inovação e Informática – CCT) held a public hearing to discuss the creation of a National Day of Awareness for Phelan-McDermid syndrome, a rare genetic disorder caused by alterations on chromosome 22. The proposed date would be observed annually on October 22.

Mothers and medical experts highlighted the importance of early diagnosis, access to multidisciplinary care, and public investment in research and inclusion. The debate was convened by Senator Flávio Arns (PSB-PR), who reaffirmed the Senate’s commitment to strengthening policies for people with rare diseases and promoting greater visibility for affected families.

Source: Agência Senado

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