[Share4Rare] Patient-Powered Co-Design Workshop

Brussels, Belgium

This Monday, another successful Share4Rare workshop was held in Brussels, organized by The Synergist. With participants from over 6 countries, the second step has been taken in order to realize this platform that benefits communities battling rare diseases. Share4Rare is a project granted by the EU in order to create a bigger awareness about paediatric rare diseases, sharing intelligence and knowledge of the people involved.

Goal

The goal of this second co-design workshop was to confirm relevant themes for the community of people connected with paediatric rare diseases, and to analyse and confirm different online solutions and services that are proposed to cover the detected needs, such as storytelling, forums, and Q&A’s. During the day, S4R’s technical partners from Omada presented the first mock-ups of the second layer of the platform. This layer is addressed to the social and emotional aspect of rare diseases, offering a secure environment to share stories and knowledge about paediatric rare diseases.

Result

We can look back on an insightful day, with many inspiring people spending their valuable time with us, providing their honest feedback and points of improvement. The patient and patient advocates enjoyed meeting each other, creating meaningful conversations, connecting more and more interested people to this project.

Big thanks to our partners!

We would like to thank AFM Téléthon, Duchenne Parent Project Belgium, Saint Joan de Déu Foundation, MPNE, Nevus Netwerk the Netherlands, and OcuMelUK for their collaboration, and are looking forward to the next workshop.

Patients are at the heart of this project! Are you a patient or patient advocate interested in joining the third Share4Rare workshop? Please contact Begonya at bnafria@sjdhospitalbarcelona.org for more information.

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