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MPS Sul 2025 Symposium promotes exchange of knowledge between doctors and families in RS

From November 28th to 30th, 2025, Porto Alegre will be the stage for the MPS Sul Symposium, a meeting that promises to unite science, health and hospitality around the rare diseases of the Mucopolysaccharidoses (MPS) group. The program highlights the participation of Dr. Hernan Amartino, from...

Historic breakthrough: gene therapy curbs Huntington's disease

British researchers reported, on September 24, an unprecedented milestone in the treatment of Huntington's disease: in a clinical trial of gene therapy, the progression of the disease was reduced by 75% after three years of follow-up. Huntington's disease is a degenerative disease caused by a...

South MPS Symposium 2025 gathers experts and families in Porto Alegre

from 28 to 30 November 2025, Porto Alegre will be the scene of the South MPS Symposium, a meeting that promises to unite science, health and welcome around the rare diseases of the Mucopolysacharides (MPs). The program highlights the participation of Dr. Hernan Amartino, international reference of...

Last days for registration at MPS Sul 2025

Registration for the Symposium on Mucopolysachesiasis of Southern Brazil and Mercosur (MPS Sul), edition 2025 are open until October 31st. The meeting will be held from November 28 to 30, 2025, at Plaza São Rafael Hotel, in Porto Alegre (RS). focused on patients, family, friends and health...

Researcher claims to be optimistic about research for Phelan-McDermid syndrome

Diagnosis: a basic right

by Andreia Bessa - Lawyer House of the Rare early diagnosis is a fundamental right of people with rare diseases and represents the starting point for access to treatment, social inclusion and full human dignity. In Brazil, more than 13 million people live with these conditions, often facing years...

Understand how the service at Casa dos Raos works

seeking a diagnosis can be a lonely path, “but in the house of the rare, this journey is managed with care and organization,” says Franciele Trapp, coordinator of the host sector, the medical superintendence of the Raros House (CDR). The manager explains how the entity's aide process...

Psychology: How to deal with the diagnosis of a rare disease?

receiving the diagnosis of a rare disease is always a striking moment, loaded with uncertainty and need for adaptation. The challenge, according to psychologist Daniele Lima Rocha, is to welcome emotions and seek lighter paths. The psychologist stresses that the patient should not be charged for...