The 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 details the scope of the portfolio for rare diseases for...
March 27, 2026RARE CONNECTIONS - Minister, Brazil has advanced in the incorporation of medicines and technologies for rare diseases, but there are still large gaps in early diagnosis and equitable access, especially in the North and Northeast regions. What are the Ministry of Health's priorities for 2026 with...
March 25, 2026The healthcare scenario in the digital environment is undergoing a profound transformation. If previously knowledge was restricted to offices and institutions, today it reaches the screen through the voices of patients who transform their experiences into mobilization tools. Among these names, the...
March 25, 2026For thousands of Brazilian families living with rare and ultra-rare diseases, the diagnosis is not accompanied by a therapeutic option capable of curing or modifying the course of the disease. This reality, although little discussed outside the medical world, is part of the routine in highly complex...
March 25, 2026Advances in neurogenetics over the past two decades have transformed the understanding of Hereditary Spastic Paraparesis (HSPs), a group of rare diseases that cause degeneration of motor neurons, resulting in stiffness and weakness in the lower limbs. If in 2008 only 17 subtypes were known, today...
March 25, 2026For those living with a rare disease, the transition to adulthood raises questions that go far beyond clinical issues: how to guarantee a livelihood and build a career in a market that prioritizes linear productivity? In the south of the country, women like Paula Geib, resident in Santa Rosa (RS),...
March 25, 2026Patients with rare diseases who live outside large urban centers face obstacles that go beyond their own health condition. Medical geneticist Isabela Dorneles Pasa, from the Santa Maria University Hospital, explains that inequality in the distribution of resources and specialists directly impacts...
March 25, 2026With the advancement of genomic research, biobanks have become central to the development of new medicines, more accurate diagnoses and personalized medicine strategies. At the same time, the storage of genetic information raises a sensitive question: who truly owns this data and how to ensure that...
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