Patients and caregivers ask, will I qualify to join Rare Patient Voice? We accept people with all health conditions! You’d think with a name like Rare Patient Voice, it would … READ MORE
Get to Know Hemophilia
The first patients we ever worked with were those with Hemophilia. We go to a lot of wonderful hemophilia events such as the National Hemophilia Foundation annual conference and the … READ MORE
Get to Know Macular Degeneration
I was able to attend a Macular Degeneration event yesterday in Charlottesville, VA. It was one of several put on by the Macular Degeneration Association across the country, a non-profit … READ MORE
Get to Know: Sickle Cell Disease (SCD)
This is the first of our series about various diseases and health conditions that we are calling, “Get to Know.” We’ll provide some facts you may not have known about … READ MORE
Why didn’t I qualify for a survey? And will my data be used even if I didn’t?
One of the most frustrating things we hear from our patients is when they don’t qualify for a study. They are interested, they have great opinions to offer, and they’ve … READ MORE
