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Rare Disease Day 2020

09:30 – 13:00, 29 February 2020
Auditorium Corino de Andrade, i3S - Instituto de Investigação e Inovação em Saúde

 

Rare Disease Day 2020 is on Saturday 29 February, the rarest day of the year. Every year, the campaign is open to everyone around the world to get involved - people living with a rare disease, their families and carers, plus researchers, policymakers, public authorities, industry representatives, health professionals, and the general public.
The Portuguese Association of Huntington Patients joined the CGPP-IBMC/ i3S in organizing an event in Porto to mark this special day. Saturday 29, 9.30 am at i3S we will make the debut in Portugal of the documentary "Absolute Beginners", directed by the French Association "DingDingDong". The documentary, subtitled in Portuguese, makes six personal portraits, in a poetic and sensitive way, about the experience of living with the diagnosis of Huntington's disease.
Following the documentary, we will have a debate that will be attended by three representatives of associated families and different professionals specializing in Huntington's disease (geneticist, neurologist, psychologists, and genetic counselor).

 

Registration

Registration is free but mandatory.