President of the Canadian Organization for Rare Disorders (Canadian Organization for Rare Disorders, in translation), Durhane Wong-Rieger met this Thursday (1st) with the Assistant Secretary of Health, Ana Costa, at the headquarters of the Secretary of Health.

The specialist is internationally recognized as the ‘voice of the few’, with people living with diseases, with small patient numbers, such as multiple sclerosis and haemophilia, having stood out as an advocate for their access to diagnostics and treatment in Canada, where she lives. During the visit, she was accompanied by Rodrigo Sampaio e Azambuja and Ariadne Guimarães Dias, representatives of Casa dos Raros, an entity in Porto Alegre that provides support for people with rare diseases.

“The visit was important to understand the commitment of Rio Grande do Sul with the diagnosis and treatment of rare diseases in Rio Grande do Sul”, he explained, praising the services of the state in the case of diseases rare, supporting patients. “The State’s commitment to rare diseases is extraordinary. It’s beyond what you see in the rest of the world.

Durhane Wong-Rieger also highlighted the work at Casa dos Raros, in particular the existence of spaces for gene therapy, a treatment that inserts genes into cells and tissues of patients for the treatment of a disease, and vector production. “It’s state-of-the-art technology that brings the latest treatments to Brazil. This is the top in terms of advancement in rare diseases. . The tour provides models to take to other locations.

Next Sunday (4), she will participate in the Symposium on Mucopolysaccharidosis of Southern Brazil and Mercosur (MPS Sul Symposium) 2022, a meeting of patients with MPS, a rare inherited metabolic disease, of autosomal recessive inheritance, caused by the irregular formation of enzymes. The event will take place at the Hotel Plaza San Rafael, in Porto Alegre.