What is our Patient Advocate Team?
This is one of my favorite new developments at Rare Patient Voice over the past couple of years.
When I started Rare Patient Voice in 2013, I went in person to patient events around the country. MS Walks in Albuquerque, Hemophilia Conferences in Anaheim and New York, Lupus Walks in the rain in Chicago. Sometimes my kids would come with me. As we added on project managers and other staff, they helped as well. We went to up to 50 events a year.
But a few years into it, one of our MS patients, Kirk, called me and wanted to know what he could do for us. He met us at an epilepsy event in Denver, and the rest is history! He set up shop in Colorado, going to patient events all over the state and beyond signing people up. He even took his clipboard to his gym. When he got too busy, he hired others. Now we have a network of over 65 Patient Advocates across 17 states. They work for us part-time. Many are patients in our panel. They go to patient events usually near where they live. So we can cover a lot more events – 375 last year! With a lot less flying (sorry, Southwest Airlines!).
And while I still go to events, and love to meet with patients and their families, our Patient Advocate Team is better. Because they have suffered through many of the same things, they connect emotionally with new patients and caregivers. Thanks to this fabulous team, we now have over 82,000 patients and caregivers in our panel. And our team has met so many in person, which means they are real, and helps us get a great response rate, since they know us by more than just an email!
Look at our In the Community page on our website. (Go to the website, then the For Patients tab, and the In the Community tab: https://rarepatientvoice.com/forpatients/in-the-community/ If you see an event in your area, please come to it and meet our Patient Advocates!
And if you know anyone who might want to be a Patient Advocate, working various weekends and some weekdays in their area, spreading the word about Rare Patient Voice, let me know! They earn $25 per hour.