Virtual coffee with patient organisations and Share4Rare

16 June 2020

Research is at the heart of solutions for all patients. However, it is not always conducted with the patient in mind. Patient organisations are increasingly invited to submit evidence to healthcare decision-makers, but collecting good quality evidence is difficult.

Share4Rare is changing that by promoting research on patients initiated by patients. They are at the start but in the future hope to offer additional support services — anything from the planning, submitting, conducting and publishing your research findings.

To share the latest updates from the Share4Rare project with the new dedicated and enhanced profile for patient organisations, a virtual meeting with members of the Share4Rare consortium,will take place on Tuesday, June 16th, 16:00 CEST. During this hour-long webinar, participants find out how Share4Rare can help you to make a difference for your disease research.

It provides practical tools for patient organisations on:

  • Patient driven research features that can benefit your patient organisation through research projects of high scientific quality
  • Share and safely collect your data and and disseminate your research initiative using a global platform
  • Networking and capacity building part of the platform can benefit your patient organisation and your patients

Join us for a virtual coffee on a meeting for Patient Organisations in Rare Disease Research on Tuesday, June 16, 16:00 CEST to find out how the Share4Rare platform can help you to make a difference for your disease.

Please register your interest here


  • Why Share4Rare was built
  • History, current status and the Share4Rare team
  • How can Share4Rare’s patient driven research feature benefit your PO?
  • PO networking and capacity building
  • Innovative feature: People Like Me algorithm
  • Showcase of PO’s role and tools
  • Experiences
    • NMD Pilot study
    • Facing uncertainties about COVID-19 in rare diseases with S4R
  • Registration demo
  • Questions and discussion

Join in on June 16, 16:00 CEST.

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