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Share4Rare: Setting the path for next generation data sharing in rare diseases

Right to be part of a community

Rare disease patients and their families have the right to be part of a community, wherever they are in the world. It is equally important that research that is performed will benefit the patient themselves. Next to this, the data that is collected should be truthful and up to date. From this standpoint, the Share4Rare project started four years ago. The project partners worked on creating an innovative and safe platform, and initiated several research projects to perform research that matters to patients.

Join the online meeting

On Tuesday June 8th15:00 – 18:00 CEST, you are invited to join the end meeting. During this online webinar, rare disease patients and their families, patient organisations, researchers, clinicians and other interested stakeholders meet and discuss this project. 


Next to several presentations on the approach and tools that have been created during the project’s lifetime, there will be a keynote speaker. She will talk on the importance of patient involvement in research, and why enabling patient organisations to drive their own research is paramount. This will be followed by an interactive discussion where the consortium will answer questions from the audience. 

For more information, visit the Share4Rare website.