Partnership Strategies With Orphan Disease Advocacy Groups - Snow Companies

Partnership Strategies With Orphan Disease Advocacy Groups

April 20, 2016


Online: 04/15/2016

Print: April 2016

By Kathy Gram

Partnership Strategies With Orphan Disease Advocacy Groups

Patient advocacy organizations (PAOs) have become a critical business partner in the drug development industry. “Creating an integrated relationship with advocacy groups enables industry partners to identify clusters of patients who can influence the direction of treating rare diseases through their first-hand knowledge of a specific illness.” “The ultimate litmus test for industry-advocacy cooperation is: Does this benefit the patients we serve?” Biopharma can support orphan disease patients and their advocacy organizations in a big way by providing missing resources. A company that sustains honest relationships continuously will have greater success in establishing and maintaining a strategic advocacy engagement than one that repeatedly starts new, short-lived initiatives without follow-ups and without delivering on promises. “There are great examples of sustained and successful engagements that benefit the entire trifecta—industry, advocacy, and patients. One that instantly springs to mind is MS LifeLines, an initiative that has successfully kept patients motivated, empowered, and adherent for well over a decade.”

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