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!