Patient and Stakeholder Engagement

Tales from the Road – World Congress Patient Advocacy Summit

This week’s Tales from the Road is from Angi Robison, Executive Director, Strategic Development Department, Rare Disease & Pediatrics, who gives us a bit about what she took away from the World Congress Patient Advocacy Summit back in October.

Greetings from the road!

I just had an excellent two days at the World Congress Patient Advocacy Summit in Arlington, VA, where this Texan was able to get her first glimpse of fall weather!

The Summit was an extremely educational and interesting meeting with a very impassioned group of industry representatives and patient groups dedicated to the patient voice. There were relevant and lively discussions on efforts from FDA through Professional Affairs and Stakeholders Engagement (PASE) as well representatives of pharma/biotech and patient groups discussing best practices to create true relationships with patients to have meaningful impact on study designs, on public policy, public education and on healthcare in general.

The recurring themes of the meeting from all sides were respect, transparency, and a little common sense. Our industry has been under a little black rain cloud (to use an A.A. Milne reference) of late in the news, and while it’s taken some time to get here, and while we still have a ways to go, I left this conference with a renewed pride in what advocacy leaders are working to achieve for each of us.