How Biopharmaceutical Companies Should Engage With Rare Disease Patient Advocates

August 6, 2012

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.

Dominique Friend talks about some of the difficulties she faces having sickle cell disease, including the fact that her pain is invisible, and the role she thinks pharma should play within the sickle cell disease community.

Katherine Leon describes getting the news from her doctor that she had the rare disorder spontaneous coronary artery dissection (SCAD), how she became an advocate and how she found others with SCAD in order to spur research.

What role do you think pharma should play with advocacy organizations?

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