We work with many patient advocacy groups and attend many of their conferences. More and more of them are creating and growing patient registries. A registry collects key information about … READ MORE
Winston Churchill and Rare Diseases
You may be aware that we recruit many of the patients and caregivers in our panel by attending patient events in person. Conferences, educational symposia, walks, events like that. It … READ MORE
Remember the VW Beetle Snowplow Ad from the ’60’s?
When I was a kid there was a memorable ad for the Volkswagen Beetle. Like everything, I found it on YouTube, here is a link to it: https://www.youtube.com/watch?v=ABcckOTVqao Looks like … READ MORE
It’s 8 PM and you need a bid – PAM to the rescue
It’s 8 pm. You’re finally getting to those bids that need to go out. And you have one with a tough to recruit patient audience. You think Rare Patient Voice … READ MORE
Tell me more about the check I will get from Rare Patient Voice
One of the great things about participating in a Rare Patient Voice study is that we pay you by check. So, you can use it for whatever you need, you … READ MORE
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