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
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
A Peek Behind the Scenes at Rare Patient Voice
Rare Patient Voice is now six years old. We’ve completed over 3,000 studies, we have 95,000 patients and caregivers, and are proud to have paid over 4.1 million dollars to … READ MORE
Get to Know: ALS
Amyotrophic Lateral Sclerosis, or ALS, has been gaining a lot of recognition over the past few years. It used to be known as Lou Gehrig’s Disease. But now most people … READ MORE
