MUITOS SOMOS RAROS

Muitos Somos Raros is the first Brazilian platform for rare disease services to unite solutions for patients, physicians and other publics. With full information chanceladas the Brazilian Society of Medical Genetics (SBGM), sets the main communication channel between the primary sources of information- patient associations, medical societies, research centers, universities, government and industry farmacêutica- and the lay population. Through the portal, the fanpage, newsletters and seasonal ev... ents, the MSR platform mobilizes social forces in the interests of 13 million individuals suffering from rare diseases in the country, enabling awareness campaigns, discussions with parliamentarians and increasing the voice of hundreds associations working for the cause in Brazil. In partnership with the Joint Parliamentary Front for Comprehensive Care for People with Rare Diseases , the MSR platform provides constant updates on the processing of bills in Congress, in addition to providing parliamentary contacts involved in the project. Warn of the importance of screening for rare diseases is another primary focus contemplated in content on newborn screening, prenatal care and guidance to individuals not diagnosed yet, in order to guide the general population in the search for early diagnosis is vital to prolong health, and quality of life.More