CPAG Meeting of Patient Groups
12:00 PM12:00

CPAG Meeting of Patient Groups

I was invited to speak at this CPAG meeting of patient groups on the topic of reimbursement. What is it, Why is it relevant to the rare disease community, and what can patients do to address the challenges….

Rare and ultra-rare groups continue to come at this complicated issue from all sorts of perspectives and with varying degrees of understanding. No matter where they start, they have one important thing in common -- ALL OF THEM appreciate very quickly how impactful reimbursement already is or will be to their patient journey! Thanks for the opportunity!

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9:00 AM09:00

Haystack Payer Incentives Meeting

The meeting was moderated by Saira Sultan, Connect 4 Strategies. Attendees included representatives of leading innovators in the ultra-orphan space. A brief introductory discussion framed up the distinction between orphan and ultra orphan from a business perspective and the lack of such a distinction in the current policy landscape, particularly given the increased awareness of “blockbuster orphan” drugs.

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