A call to improve the daily life of people with rare diseases
Do you have a proposal to improve the daily life of people with rare diseases?
Through the “Citizen Science to Improve the Quality of Life of Individuals with Rare Diseases” Project and call, the National Rare Diseases Centre of the Italian Higher Health Institute is looking for operative ideas, solutions, technology, services and strategies to address the small and great difficulties faced daily by individuals with rare diseases. Facing the health issues and disabilities of those with rare diseases means finding appropriate solutions to their needs to develop life projects.
The Citizen Science Project on rare diseases addresses citizens, schools, associations, researchers, and institutions. The objective is to collaboratively contribute to improve the lives of patients and their families through a proposal and the sharing of tools, ideas, and experiences.
We are sharing this project with everyone, starting with the community of Project Factor J that, together with patient associations, has already focused on the issue of rare diseases.
HOW TO PARTICIPATE
Participation is free and open to all interested parties without any limitation in terms of age, as specified in the call. Each participant may submit one or more proposals by October 30, 2022.
Submissions must not be protected by intellectual rights or patents and must be free to use by the community without economic or commercial profits. Proposals may address more than one area (mobility, independence, communications, cognitive abilities, sports and free time, management of emotions, and social, scholastic, and professional inclusion strategies). Proposals can be submitted in various formats (pdf, image, audio, video, ppt).
To participate, please submit your proposal on-line with the following registration form, following all of the instructions.
Submissions will be evaluated by a multidisciplinary scientific committee composed of experts and patient representatives.