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.

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