Suzie-Ann Bakker
Press contact

Share4Rare End Event: setting the path for next generation data sharing in rare diseases

Share4Rare End Event
After four years of intense work, the Share4Rare consortium will share the findings and outputs of the Share4Rare project, setting the base for the next generation of data sharing in rare diseases.

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, and that the data that is collected is 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.

On Tuesday June 8th, 15:00 – 18:00 CEST, you are invited to join rare disease patients and their families, patient organisations, researchers, clinicians and other interested stakeholders to the online end meeting and discussion of 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 elaborate 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. 

Please register your interest here.  


  • 15:00-15:05 Welcome, netiquette. Dr. Loretta Anania. Project Officer Communication Network Content & Technologies. European Comission.
  • 15:05-15:10 Introduction to Share4Rare. Begonya Nafria. Sant Joan de Déu Research Foundation.


  • 15:10-15:25 Keynote: Patient involvement in research, why enabling POs to drive their own research is so critical. Bettina Ryll. Melanoma Patient Network Europe.


  • 15:25-15:35 Testimonial from Share4Rare platform users. Sandra Iglesias (Objetivo Diagnóstico) and Jeffrey Galuidi.


  • 15:35-15:45 V2A2 tool to promote patient agency in research. Gilly Spurrier-Bernard. Melanoma Patient Network Europe.
  • 15:45-15:55 Patient Advocacy Toolkit. Suzie-Ann Bakker. World Duchenne Organization.
  • 15:55-16:05 People Like Me. Jon Garrido. Universitat Politècnica de Catalunya.


  • 16:05-16:20


  • 16:20-16:40 Preliminary outcomes of the research project on neuromuscular diseases. Michela Guglieri. University of Newcastle.
  • 16:40-17:00 Learnings in European data space. Hugo van Haastert. DG SANTE. European Commission.


  • 17:00-17:15 Future forecasting: workshop learnings. Melanoma Patient Network Europe.
  • 17:00-17:15 How we proceed to do rare disease research through citizen science. Begonya Nafria, Sant Joan de Déu Research Foundation.


  • 17:30-17:45 Q&A. Mod: Suzie-Ann Bakker. World Duchenne Organization.
  • 17:45-18:00 Wrap-up. Dimitrios Athanasiou (World Duchenne Organization) and Begonya Nafria (Sant Joan de Déu Research Foundation).
Patient advocacy