Share4Rare hosted a co-creation workshop on Friday 18th May at MDA Hallas in Athens, Greece. Content for the S4R platform was reviewed by patients and patient advocates for content and readability.

Based on a socially innovative approach, and building on citizen science and collective intelligence, the Share4Rare Project engages and connects all relevant stakeholders towards improving quality of life, disease management and collection of scientific knowledge and data on rare diseases.

The project is funded by the European Union’s Horizon 2020 research and innovation programme and will be coordinated by Sant Joan de Déu Foundation.

The platform will be built around three important pillars:
Education, Sharing and Research.

Share4Rare (S4R) takes advantage of the highly-motivated group of citizens (from patients to researchers, volunteers to public health representatives and health professionals) linked directly or not to rare diseases, and their expertise. It builds on existing knowledge and initiatives, and ensures a space for debate, co-creation, and further research through shared data and a patient centered approach.

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission


“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern