Suzie-Ann Bakker
Press contact

Virtual coffee with patient organisations and Share4Rare: 'Advancing a Patient-Centric Research Agenda'

Webinar POs June 16th
This new Share4Rare webinar will focus on the new Share4Rare research feature that is addressed to patient organisations (POs).

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. We 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.

In this webinar you will learn:

  • How Share4Rare patient-driven research features can benefit your patient organisation through research projects of high scientific quality within your community

  • How you can optimally utilize Share4Rare's PO feature to safely collect your data and and disseminate your research initiative using a global platform

  • How can Share4Rare's PO networking and capacity building can benefit your patient organisation and your patients

Help advance your research agenda! The Share4Rare research feature allows patient organisations to address your research needs in a safe and supportive environment. Share4Rare facilitates research projects needed by patients and patient organisations by connecting them with ongoing projects relevant to their conditions. 


Diverse members of the Share4Rare consortium, the coordination team and POs representatives will address the following topics during the webinar: 

  1. Why Share4Rare was built

  2. History, current status and the Share4Rare team

  3. How can Share4Rare’s patient driven research feature benefit your PO?
  4. PO networking and capacity building
  5. Innovative feature: “People Like Me” algorithm
  6. Showcase of PO’s role and tools
  7. Experiences:
    • NMD Pilot study
    • Facing uncertainties about COVID-19 in rare diseases with Share4Rare 
  8. Registration demo
  9. Questions and discussion


To register on the webinar, please go to the following link. Should you have any questions, you can contact Join us next Tuesday June 16th at 16:00 CEST! 


Patient advocacy