Many clients know we list our patient panels and counts on our website: rarepatientvoice.com/for-researchers/patient-panels/
There are so many diseases and health conditions. In the rare disease community, we talk of 7,000 rare diseases. And we now have patients not only with rare diseases, but with non-rare as well. Medium rare, I like to say.
We listed over 300 conditions in our panels. But as you can imagine, we’re always finding more patients. We have been putting them in “other,” when it is a disease we don’t already have on the list. We’ve been going through these and put many of them in their own category. Now we have 480 diseases/health conditions on our list! We’ve added ones like ABCD Sydrome, Amputation, Charge Syndrome, Chronic Intestinal Pseudo-obstruction (CIPO), Dermatomyositis (DM), Holoprosencephaly (HPE), Landau Kleffner Syndrome (LKS), Paraneoplastic Syndrome, Primary Ciliary Dyskinesia (PCD), and many others. Some we only have a handful of, but we’re often told that is still helpful.
So, take a new look at our list – and let us know what conditions you need us to grow! We’ll look for patient events like conferences, symposia, walks, we’ll contact advocacy groups and support groups to collaborate. We take it as a challenge to build new panels, so challenge us!