About ICVS – Life and Health Sciences Research Institute
The celebration of Rare Disease Day occurs at ICVS/University of Minho since 2021. Our aim is to disseminate knowledge and to raise awareness about rare diseases in the academic and general population, including the organization of the following activities: the solidarity walk “Encontros Raros: Caminhada solidária pelas Doenças Raras” (2024/03/09), to help a portuguese association of Rett Syndrome (ANPAR – Associação Nacional de Pais e Amigos Rett); the event “Encontros Raros: Cientistas raros por um dia” (2023/02/24), which allowed patients with rare diseases and their caregivers to visit the ICVS laboratories; the webinar “Encontros Raros: Investigadores raros à conversa com doentes raros” (2022/02/28), a conversation between the patients and their families and caregivers with researchers and medical doctors; the production of a short-documentary “Doenças Raras: Diagnóstico, Investigação e Tratamento” (2021/02) (available at: https://www.youtube.com/watch?v=lql7mZpYwic&ab_channel=EscoladeMedicinaUMinho); sharing curiosities about rare diseases and quizzes on social media of ICVS/School of Medicine of University of Minho and also collaborating on Light up for Rare and using the colors of rare diseases in the ICVS/EM-UM building, the Cathedral of Braga and the Sanctuary of Bom Jesus do Monte.
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