Toolkit to help rare disease communities raise awareness and advocate for better clinical research in the rare disease field
Co-development of the process and definition of guidelines to setup and grow up a participatory social community of patients/families. This comunity is created to work together to improve the quality of life of patients with rare diseases.
Strategic guidelines for the creation and management of the communities offering tools to ensure a user centred approach that can contribute to the sustainability of the communities.
Initial version of the platform to be tested with two specific groups of rare diseases: neuromuscular diseases and rare tumors.
Report with the conceptual proposal of the design of the two types of communities of S4R
Definition of the public content that is going to be published for all the users of the platform and the procedures for its update.
Definition of the specific content about rare disease groups that is going to be published for the users of the awareness and empowerment communities, and the procedures for its update.
Plan to communicate the project and disseminate the activites, knowledge and other outcomes achieved.
Interim report to European Commission
Report with the configuration and working rules of the Editorial Review Committee.
"Report for the implementation of the right tools to ensure the procedures and rights regarding the personal and clinical data donation. Deliverable aligned with the ""Data Management Plan"" (D 7.1)"
Report with the definition of roles' categories and about their permissions to access to the differnet layers of the platform. This information will be validated in the co-creation activities and assessed at technological level by the IT partners.
Protection of Personal Data (POPD) report
Design the rules of interaction of the users regarding the different categories of contents and tools of the platform.
Conceptual design for the IT development of the platform including the outcomes of the co-design activites (workshops and hackathons)
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