Aligning on Value - Common challenges to overcome in rare disease : IC Fireside Chats - Episode 16
Rare diseases face a paradox: the need for urgent access meets a limited evidence base.
In this episode, Omar and Adam unpack what makes value alignment so tough in rare conditions, where uncertainty is high and endpoints are often unconventional. Through case examples, they explore how to shift payer conversations beyond “how much?” to “what value really means.”
Themes include:
Why rare disease deals stall at the value stage
Approaches for agreement under clinical and financial uncertainty
Making space for risk-sharing, not just risk-avoidance
Disclaimer: This presentation is for educational and informational purposes only, and is not intended as legal or policy advice. This presentation is based on non-confidential intelligence. Views expressed by the speakers are personal opinions and should not be attributed to anyone else. No part of this presentation may be reproduced for commercial purposes without the express permission of Verpora.
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