Many of you may know that we recruit many of the patients and caregivers in our Rare Patient Voice patient panel by going to patient events like conferences, walks and educational symposia. But with covid, these events are all cancelled or postponed! We know they’ll be back – I’m betting sometime next year – but in the meantime, we haven’t stopped recruiting patients.
Debi has been our outreach specialist and she has been busy reaching out to advocacy groups, support groups, individuals with patient networks, and members of closed Facebook groups. This year alone she’s reached out to find patients with over 150 diseases, such as Rett Syndrome, Giant Cell Tumor, all types of leukemia and lymphoma, Prader Willi Syndrome, and dozens more!
She’s also run targeted Facebook ads. She’s run 70 ads that have made nearly 300,000 impressions and generated almost 5,000 link clicks!
Her hard work has paid off. We’ve been getting about 1,000 new sign ups each month. And we’re still more interested in quality than quantity. We won’t confirm a sign up unless we’re sure, based on digital fingerprinting and good old-fashioned manual checking – including phoning the patients – that they are authentic. Our reputation is too important to let in dubious characters!
Debi’s been so busy that we’ve added Jen full-time to assist her! They are both great in that they know what it takes to relate to patients and caregivers, and they put their heart into their work.
Please let us know what types of patients you are looking for. If we don’t have them, or only have a few, we’ll put Debi and Jen to work to find more!