Suzie-Ann Bakker
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Share4Rare: game changer in rare disease research

Image of the Earth with a lot of connected dots: a global community
Wisdom of the crowd is a powerful tool to advance rare disease research. It’s not just about rare disease families to be citizen scientists; it’s about understanding that knowledge and experience are not limited to one rare condition. It’s about giving parents the opportunity to become courageous participants in their child’s health journey, strengthening the scientific mentality in the rare disease world.

Share4Rare enables rare disease families around the world to connect, offering a secure social network that creates a safe haven for talking to peers and clinicians. The multi-tier validation framework for users is a revolutionary aspect in the field of rare social networks and creates a safe worldwide connection between rare disease patients and caregivers.

In this protected environment, rare disease stakeholders –carers, clinicians, researchers– can ask and answer questions based on their knowledge and expertise. Users can compose and answer questions, categorizing by topic using predefined tags. In their personalized area, users keep track of questions they follow, their own questions and questions they have answered. An algorithm then builds on this knowledge by posing possible questions which might be of interest to the user.

By asking and answering those questions, participants build a rare disease database with valuable knowledge considering rare diseases. Computational, citizen and clinical science are then combined to draw insights and conclusions of this growing rare disease database. This creates a solid base for research recommendations to institutions, who then can deliver patient-driven research.


Patient organizations play an important role in educating their members to become citizen scientists and start conversations to kickstart patient-driven research. Share4Rare leverages this social responsibility by connecting various patient organizations so they can learn from each other and join forces to influence healthcare decision-makers practicing rare advocacy.

Next to patient, carers and patient organizations, researchers and clinicians are involved by donating patient-consented data to contribute to enrich Patient Reported Outcome Measures (PROMs). This starts with paediatric rare tumours and neuromuscular disorders, which are the diseases that currently have a research project ongoing. By verifying and enriching the PROMs, the information on aspects of the patients’ health status will be more accurate, ultimately benefiting all rare disease stakeholders in equal measure.

Involvement of the researchers and clinicians also offers a glimpse in the life of rare disease patients’ way beyond the occasional appointments. This results in a deeper understanding of their patients’ needs and desires, enabling them to take well-informed decisions about treatment and medication.

Try Share4Rare and kickstart patient-driven research by building a global network of knowledge and expertise. Sign up online to start your rare disease journey today!