December 7, 2022

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Participatory science that improves the lives of people with a rare disease: projects

The world of schools, associations, researchers, institutions and citizens in general: Everyone is invited to participate in the project “Participatory Science to Improve the Quality of Life of People with Rare Diseases”, coordinated by the National Center for Rare Diseases, Higher Institute of Health. During an online meeting promoted for tomorrow, November 23, and also broadcast live, the first six projects approved by the Scientific Committee will be presented by their authors.

Graphical treatment of rare diseases

Graphical setting dedicated to rare diseases

The world of education, associations, researchers, institutions and citizens in general: everyone is invited by October 30 to participate in a project we have already done Busy many times This year, ie Participatory science to improve the quality of life of people with rare diseasesin coordination National Center for Rare Diseases From the Istituto Superiore di Sanità, funded by the Ministry of Health, as part of a cooperation agreement.
The aim of the initiative, as we remember, was to improve the lives of people with rare diseases and their families, by bringing together Ideas, solutions and technologiesrelated to one of the following areas: Mobility; independence; Telecommunications; Cognitive abilities; Sports/Entertainment; Emotion management; Strategies for social, school and work inclusion.

During an online meeting promoted tomorrow afternoon, November 23 (18-19.30), will now be presented by its authors Six projectsamong those received and approved by the Scientific Committee, or, as confirmed by the National Center for Rare Diseases, “the first results of Participatory ScienceWhich proved to be a real formulation of ideas, strategies and practical solutions aimed at satisfaction Various and all important life needsTo face difficulties, small and large, every day. (SB)