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What would Rare Disease Patients tell you if you asked them?

Friday 09 March 2018, 12:30 PM - 1:30 PM

This webinar will explore considerations for conducting online research in rare diseases.

We will discuss why online research works well for hard-to-reach groups like those with a rare disease, the importance of going direct to patients to understand their experiences, why rare disease needs a personal approach even online and how social media can be used well for online research.

The webinar will cover the following themes:

  • Why rare disease? Why online?
  • Challenges & opportunities in rare disease
  • Where we started, early lessons and where we are now
  • Insights that can be derived from rare disease patients
  • Gathering data from rare disease patients over time
  • Use of patient insights in clinical trial design
  • Maintaining patient communities in rare disease
  • Deep dive approach to research
  • Future directions in biodata

This webinar will be conducted for us by Raremark.

See speaker details

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