No one is alone in Share4Rare. We are building a community to gather patients, carers, clinicians and researchers to join forces and make a difference in rare diseases.
Living with a rare disease can sometimes be a struggle. Meet our members and see how Share4Rare can help you.
Share4Rare is funded by a Horizon2020 grant from the European Commission. The project is divided into work packages aligned with its strategic objectives.
We investigate to deliver effective tratments and the only way forward is to work in parthership with patients and families at all stages of research.
Research is the only way to get around the limits.
Share4Rare is a patient centered platform focused in the research that matters to patients.
Leader: The Synergist
The main objective is to build a collective participatory and international bottom-up platform of patients, caregivers, researchers and other stakeholders involved in the field of rare diseases and the collection of knowledge about them.
This WP is going to be based on collaboration, co-creation, co-development, and community building.
Patients and their relatives are at the heart of the platform. With this community of users we are going to co-create, co-develop, and co-design tools and contents of the platform with the help of specific workshops and engagement strategies (surveys, social media, webinars…). Moreover, online and offline tools for patients advocacy are going to be created with the aim of increasing the awareness about collective intelligence as a methodology for research on rare diseases.
Leader: Melanoma Patient Network Europe
Share4Rare is going to include two different types of communities, with two different goals: awareness and empowerment.
The first one, the awareness community, is going to facilitate the interactions of patients and relatives at an international level, offering them social media resources, such as wiki spaces, open forums, etc.
The second one, the empowerment communities, are going to promote collective research projects thanks to the close collaboration of patients and families with the scientific team. The rules of this community are going to be based on a win-win approach for all those involved. Educational medical chapters are going to be offered to the families, to increase their knowledge and skills to manage a specific disease. Scientific surveys will also be offered for the donation and collection of valuable medical knowledge on rare diseases. During the collaboration of patients/families with this community, a continuous feedback about the common knowledge collected by the group will be offered.
The main goal of this WP is to define the blueprint of both communities and pilot them with two specific groups of diseases: paediatric rare tumours and neuromuscular diseases.
Leader: Òmada Interactiva
Òmada, in partnership with UPC (Universitat Politècnica de Catalunya), is going to design and develop the Share4Rare platform, which will be able to manage a large quantity of data generated by the users. The whole process is going to be performed using open source tools.
The system is going to analyse and integrate every type of data produced by the community, giving back automated reports with two main goals: to increase the collective scientific intelligence and to enhance the engagement of the users.
Two hackathons are going to be performed during the project, with the aim of involving the community in the specific development of technological tools to be included in the Share4Rare platform. This activity is aligned with the participatory and collective approach of the project, based in the building capacity of communities formed by all the different stakeholders linked to rare diseases.
Leader: Sant Joan de Déu Foundation
The aim of this WP is to provide all of the content for the different communities of users in Share4Rare. Different kinds of content will be included in the platform to enable us to achieve these goals:
Leader: Cliclab
Share4Rare aims to have a positive impact on the society. The evaluation of the expected social impact of the platform, as the ROE (Return Of Engagement) and the PAM (Patient Activation Measures) among other relevant metrics, will help to assess the benefits of being involved in Share4Rare.
Another important task is to achieve sustainability of the platform after the end of the three-year project in order to extend it to other rare diseases. An exploitation model will be defined implemented over the course of the project to study different opportunities to make feasible the scalability of the platform with the inclusion of new groups of diseases.
Leader: World Duchenne Organization/UPPMD
The tasks of this WP are related to communication about the project and the dissemination of its results addressed to the general public and target groups of interest for the duration of the project.
Communication is essential to increase awareness in society about the needs and features of rare diseases. Different activities will be performed and different means of communication will be used, with the aim achieving significant impact among the different user groups which include: patients/families, scientific community, and general society.
Social media networks are going to be a powerful tool to spread the word about the project and also to attract users to the platform.
Participation in scientific events will ensure dissemination of the project and its outcomes.
Leader: Polytechnic University of Catalonia
The main aim of this working package is to follow the European privacy regulation for the collection, usage, and storage of patients’ clinical data in the Share4Rare platform.
Standards for data integration, able to integrate heterogeneous sources of data into homogeneous, standards-based personal health records system, will be essential to enable the implementation of biostatistics tools to analyse the donated data.
Leader: Sant Joan de Déu Foundation
The FSJD is in charge of coordinating the project. It acts as a link between the project partners and the European Commission, maintains a constant communication with the partners and ensures the on-time delivery of the work.
Several boards are created to ensure the coordination of the project and the development of the different tasks:
Leader: Sant Joan de Déu Foundation
The FSJD is in charge of ensuring that the activities of the Share4Rare project are aligned with the ethical considerations of the rights of the paediatric patients, their families and in general with clinical research.
For this reason the project has the approval of the Ethics Committee of our institution and we have delivered an Ethics Report about the project.
