Real Experience, Real Impact: Valuing Rare Disease Treatments in Healthcare

Real Experience, Real Impact: Valuing Rare Disease Treatments in Healthcare

Wednesday, November 29, 2023

Join the Innovation and Value Initiative (IVI) and EveryLife Foundation for Rare Diseases to explore the critical role of patient-centered outcomes and health technology assessment (HTA) in advancing rare disease therapy development and access. Our panel of experts and key stakeholders will share groundbreaking insights and recommendations from research that places patients at the center of the discussion. (Learn More About IVI’s Rare Disease Initiative)

Real Experience

  • Hear firsthand accounts from patients as they discuss the importance of considering patient-centered outcomes in evaluating rare disease therapies.
  • Discover the outcomes identified through this project that illuminate critical factors that truly matter to patients, caregivers, and families affected by rare diseases.

Real Impact

  • Understand the significance of fostering patient-payer dialogues and multi-stakeholder collaborations in driving meaningful change in HTA for rare disease therapy.
  • Gain perspective on these recommendations to prioritize for implementation of HTA and how these actions are poised to shape the future of HTA for rare disease therapies.

This webinar is designed for a diverse audience, including patients, caregivers, payers, employers, policymakers, pharmaceutical professionals, and researchers.

* This event is organized by the Innovation and Value Initiative, sponsored by Alexion, and partnered with EveryLife Foundation for Rare Diseases.

Richard Chapman

Chief Science Officer at Innovation and Value Initiative

Annie Kennedy

Chief of Policy, Advocacy & Patient Engagement at EveryLife Foundation for Rare Diseases