Julie Flygare: Rare Disease Patient Advocates and Orphan Drugs

For orphan drugs, the marketing strategy should include increasing awareness and education about the disease. This is a key mission for many rare disease advocacy groups. So in the orphan drug space, the best marketing has advocacy as a part of it. Siren invited a few rare disease patient leaders to attend the Rare Disease and Orphan Drug Leadership Congress in Philadelphia last week. We facilitated conversations around the topic of how biopharmaceutical companies can and should engage with patients.

Julie Flygare discusses living with narcolepsy with cataplexy, how she became an advocate and how she’s helped provide education to pharmaceutical company employees.