Share4Rare was born!
Sant Joan de Déu Foundation has been granted for the European Commission to coordinate the Share4Rare project. This is a collective awareness platform of patients, caregivers, researchers and other stakeholders involved in the growing health challenge of rare diseases (RD). Based on a socially innovative approach, and building on citizen science and collective intelligence, we will engage and connect all the relevant stakeholders, towards the improvement of the quality of life, the disease management and the collection of scientific knowledge and data on RD. The platform will be built around three important pillars: Education, Sharing and Research.
Share4Rare will take advantage of the highly-motivated group of citizens (from patients to researchers, from volunteers to public health representatives and health professionals) linked directly or not to rare diseases and their expertise. It will build on existing knowledge and initiatives, and will ensure a space for debate and co-creation, and a space for further research. S4R will be based on shared data, and on the priorities set by the community (patient centered approach).
The new platform is based on the expertise of the coordinator managing a previous project: Rare Commons (RC). This is a platform that nowadays includes 9 different diseases. RC has demonstrated that the collective intelligence coming from parents of children with rare diseases it’s needed to increase the current knowledge that researchers and other stakeholders have. Significant communities of patients samples have been achieved, in several cases with a higher number of patients compared with previous medical articles Share4Rare is proposing to deal with two important challenges that will improve the previous experience with the Rare Commons project:
- Increase the power of the users of the platform, developing a platform based in a bottom-up model, focused in a patient centered design.
- Promote the synergy studding groups of diseases with common features, instead of individual diseases.
The platform will be accessible for the users at the beginning of 2019 and is going to be piloted with two specific groups of diseases: neuromuscular disorders and paediatric rare tumors.
The voice of the patients is in the heart of the project and is included in the consortium with the participation of two relevant patients' organizations: The World Duchenne Organization (United Parent Projects Muscular Dystrophy - UPPMD) and the Melanoma Patient Network Europe (MPNE). Other members of the consortium are focused in other important areas of expertise: technology developers (Omada Interactiva), biostadistics (Universitat Politècnica de Catalunya), social innovation (The Synergist), clinical background in neuromuscular disorders (Newcastle University) and socioeconomic impact (Asserta).
The kick off meeting of the project was held in Barcelona, on the 11th and 12th of January. During the next year, centered in the development of the platform, several activities are going to be performed to ensure that the voice of the patient is included in this initiative from the very begging. The mission of Share4Rare is to improve the quality of life of the patients and their families suffering from rare diseases. The best way to achieve this very important goal is to work collaboratively to increase the scientific knowledge on the rare diseases.
Do you want to hear more from the project?
Do you what to be involved in any?
We would love to hear from you! Your ideas, suggestions and volunteer participation are welcomed and much need!
