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Social media platform dedicated to rare diseases, using collective intelligence for the generation of awareness and advanced knowledge on this large group of diseases.

Deliverables

Toolkit for patient advocacy

Toolkit to help rare disease communities raise awareness and advocate for better clinical research in the rare disease field

Co-development model and guidelines

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.

Guidelines for the creation and management of every type of communities.

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.

Share4Rare platform

Initial version of the platform to be tested with two specific groups of rare diseases: neuromuscular diseases and rare tumors.

Guidelines about the structure of the communities: layers, contents and interactions.

Report with the conceptual proposal of the design of the two types of communities of S4R

Guidelines for the content development for the public layer of Share4Rare

Definition of the public content that is going to be published for all the users of the platform and the procedures for its update.

Guidelines for the content development for the awareness and empowerment communities of Share4Rare.

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.

Dissemination and communication plan

Plan to communicate the project and disseminate the activites, knowledge and other outcomes achieved.

Interim report to European Commission

Interim report to European Commission

Report with the configuration and working rules of the Editorial Review Committee.

Report with the configuration and working rules of the Editorial Review Committee.

Report with the rules about privacy and access implemented in the platform

"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 about the roles and permissions of the different users.

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

Protection of Personal Data (POPD) report

Report about the patients' involvement to generate citizen science on rare diseases.

Design the rules of interaction of the users regarding the different categories of contents and tools of the platform.

Report of the conceptual design of the CAPS

Conceptual design for the IT development of the platform including the outcomes of the co-design activites (workshops and hackathons)

Data Management Plan

Guidelines on the type of data and how it will be collected and stored, rules regarding privacy and ownership, together with the clearset up to ensure the access of the data via the European Open Data Portal.

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