Capturing Real Impact in Rare Communities with Fit-for-Purpose Metrics

• 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

Speakers:

Caroline Allen

Head, Patient Advocacy

ITF Therapeutics