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
We now have more health conditions!
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 … READ MORE
Does Rare Patient Voice Just Recruit Rare Patients?
This is a great question. With a name like Rare Patient Voice, we just recruit rare patients, right? No! When we started Rare Patient Voice 6 years ago, we just … 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
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