The fourth edition of Conexões Raras, a quarterly newsletter from Casa dos Raros, is now in circulation. The publication features articles on sexuality/reproduction and rare diseases, expanded neonatal screening, clinical tests and legal...
June 23, 2026
On April 29, the world celebrates "Undiagnosed Day" to give visibility to patients who have a rare disease that has not yet been diagnosed. To mark the date, the Undiagnosed Diseases Network International (UDNI) launched a global manifesto focused on...
April 22, 2026The third edition of Conexões Raras, a quarterly newsletter from Casa dos Raros, is now in circulation. The publication, from January-March 2026, features an exclusive interview with the Minister of Health, doctor Alexandre Padilha, who...
March 27, 2026This February 28th, the calendar marks more than the end of a month; marks the wake-up call for a journey of overcoming that affects millions of Brazilians. World Rare Disease Day was chosen to illuminate the reality of families who often live for...
February 11, 2026Edition no. 2 of Conexões Raras (Oct-Dec 2025), details advances in research into Huntington's Disease, as well as studies involving MPS III. It also explains optical mapping of the genome, an innovative technique that has been applied by a...
November 27, 2025from 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...
September 29, 2025Registration for the Symposium on Mucopolysachesiasis of Southern Brazil and Mercosur-2025 edition 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). Aimed at...
September 26, 2025receiving 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...
September 17, 2025by Andreia Bessa - Legal Consultant of the Rare House 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...
September 17, 2025Phelan-mcDermid syndrome, also known as 22q13 syndrome, represents one of the many fields of the field of rare diseases. Of genetic origin, the condition is caused by changes in the end of the long arm of chromosome 22, directly impacting the...
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