Caroline Allen
Head of Patient Advocacy & Communications ITF Therapeutics
Seminars
Thursday 7th May 2026
Capturing Real Impact in Rare Communities with Fit-for-Purpose Metrics
1:15 pm
- Designing fit-for-purpose metrics when sample sizes are tiny and variability is high
- Capturing qualitative, relationship-based engagement in structured, defensible ways
- Building trust with rare communities while measuring burden, experience, and expectations
- Demonstrating impact to investors and internal leadership despite limited datasets
