The initiative
Share4Rare (S4R) is a collaborative EU-funded research project involving 9 partners from 5 countries (Spain, Netherlands, Sweden, UK and Belgium) which aims to design and boost an online community focused on rare diseases, involving patients, caregivers, researchers, patients’ organizations and other stakeholders.
The main outcome of the project is a collective awareness platform where families and professionals from all over the world can engage and connect to find solutions to oncologic and neuromuscular diseases, implement the research sharing information and experiences and improve the quality of life, the management and the collection of scientific knowledge.
Share4Rare platform has been designed around the three main pillars of care, education and research, which are reflected in the double architecture of the platform: a public section is available where information about rare diseases is accessible as a Project library, and the private profile, where users (patients or professionals) can register and add the personal details about the healthcare needs they have, or their research objective.
Share4Rare: An Open Platform
The next phase of the project, after its end in June 2021, is to boost the information about the rare diseases among the population and increase an overall understanding. With the COVID19 crisis the digital reality became stronger, and the connections between people were increasingly driven by social media platforms. In health sciences these methods were already in use as good practice, and can now be focused on processes lead by the users themselves to cooperate in the research. The platform contributes to outlining this model of collaboration and production of collective intelligence, built on participatory and innovative approaches. Share4Rare platform includes social and health systems alongside the stakeholders and users involved. The expertise of citizens related to rare diseases can open traditional research method to a more horizontal dynamic collaboration with no borders to improve needs and quality of life of a specific community.
The digital approach based on a personal algorithm and the human interaction is going to make up to the lack of information and the geographical gap between alike disease cases, granting the researchers and patients’ organization to collect data about them.
Next steps
Share4Rare is a patients-centred platform which, from the very beginning, has been aimed to be a feasible solution to face the reduced research about rare diseases and reduced investment. Opening up the horizons of the project, it can lean on social and local initiatives and be adapted to a wider range of needs and improved alongside the upcoming technologies.
Through a on purpose developed algorithm, patients can connect with people struggling with a similar situation, adding more valuable information and comparative content for researchers to improve studies about rare diseases.
Sustainability
After the last phase of the project the consortium planned to create a spin-off of the entire project, focusing on some aspects and looking for collaboration with other entities.