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
Why didn’t I qualify for a survey? And will my data be used even if I didn’t qualify?
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
What health conditions do you accept?
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
