Casa dos Raros is honored at the Legislative Assembly of RS

Casa dos Raros, from Porto Alegre, received on September 17th the Medal of the 56th Legislature of the Legislative Assembly of Rio Grande do Sul, nominated by state deputy Prof. Issur Koch. The honor recognized the institution's trajectory of innovation, science, care, research and solidarity, which in just two years of operation became a national reference in the care of people with rare diseases. On the same occasion, the Parliamentary Front in Defense of People with Rare Diseases was installed.

PERFORMANCE - Currently, around 13 million Brazilians live with a rare condition, 600,000 of them in Rio Grande do Sul alone. Casa dos Raros, created in 2023, has already served more than a thousand families free of charge and carried out around 10,000 consultations and 25,000 laboratory tests. "Our job is to care for each patient as unique, with a multidisciplinary team that works in an intensive and personalized manner", highlighted Carolina Fischinger, the institution's medical director.

ONE HUNDRED DAYS - Geneticist Roberto Giugliani, co-founder of the project, explained that the institution managed to reduce the waiting time for a diagnosis from around five years, the national average, to just 100 days. "Casa dos Raros offers humanized care, placing the patient as the protagonist of their care. We want the diagnosis to be reached quickly and for each family to have quick access to the most appropriate management", he added. 

PARLAMENTARY FRONT - At the same ceremony, the Parliamentary Front in Defense of People with Rare Diseases was installed, created by deputy Issur Koch. The event was attended by young Felipe Mielke, aged 16, diagnosed with Duchenne Muscular Dystrophy, who will be the ambassador of the Parliamentary Front. "It is important to give visibility to this issue so that everyone can receive adequate treatment. Faith has always sustained me, even in difficult times. For those who face challenges, never give up, God always takes care of us", said Felipe.

Casa dos Raros is a non-profit organization that depends on the support of society to maintain its work. Anyone interested in registering for service or supporting the institution can access: www.cdr.org.br