December 7, 2022

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Participatory science and rare diseases: an update on the latest technology

As stated at that time, until October 30, everyone, from the world of the school to the world of associations, from researchers to representatives of institutions, but in general to all citizens, will be able to make their contribution, free and free, to the initiative “Participatory science to improve the quality of life of people with diseases Rare”, which was coordinated by the National Center for Rare Diseases of the Instituto Superiore di Sanità. The day after tomorrow, October 5, an online meeting is scheduled to update information about collecting and sharing ideas and projects

An English child suffering from a rare disease with his father

A child suffering from a rare genetic disease with his father

We have already given ample space, in recent months, to the project Participatory science to improve the quality of life for people with rare diseasesin coordination National Center for Rare Diseases Istituto Superiore di Sanità, funded by the Ministry of Health, as part of a cooperation agreement, an initiative aimed at improving the lives of people with rare diseases and their families, by collecting Ideas, solutions and techniquesrelating to one of the following areas: Mobility; independence; Telecommunications; Cognitive abilities; Sports / Leisure; Emotion management; Strategies for social, school and work inclusion.
It is important to remember the deadline for October 30the date when everyone, from the world of schools to the world of associations, from researchers to representatives of institutions, but in general to all citizens, will be able to contribute to the initiative, using Various toolssuch as text, images, video, audio, or PowerPoint presentations.

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The project will be allocated this afternoon the day after tomorrow, Wednesday October 5thonline meeting, for Update on state of the art To collect and share ideas and projects, which will be collected at the designated site and then made available to everyone. (SB)

It will be possible sign in Follow the event on the platform Zoom Across this link. The webinar can also be followed online Facebook Direct On the Rare Diseases Toll Free page. for more information: [email protected].