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Online Approaches in Rare Disease Research


12:30 PM - 1:30 PM


What would rare disease patients tell you if you asked them?

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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rare diseases

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