Brasília – Specialists highlighted the urgent need for dedicated policies for Brazilian adults living with rare diseases during a Senate Social Affairs Committee (CAS) hearing on Monday (11). Conditions like multiple sclerosis, neuromyelitis optica, and amyotrophic lateral sclerosis (ALS) were cited as examples of diseases that significantly impair patient autonomy, work capacity, and social interaction, especially when diagnosis and treatment are delayed, burdening both public and private health systems.

Senator Damares Alves (Republicanos-DF), one of the organizers of the debate, emphasized that the issue must not remain “forgotten or shelved.” She noted the public’s strong engagement in the discussion, with over 250 contributions submitted through the Senate’s e-Citizenship platform.

According to the Ministry of Health, around 13 million Brazilians—approximately 5% of the population—live with some form of rare disease.

Source: Agência Senado

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