Since it’s February, it’s already too late to say Happy New Year. But I didn’t want to miss the opportunity to say thank you. The many patients and caregivers who … READ MORE

We found a long time ago, patients (and caregivers) know other patients and caregivers. Many of our Rare Patient Voice members came from referrals from others. So, we love referrals! … READ MORE

It is 2020. Everyone uses smart phones, tablets and who knows what other mobile devices. Which is great, as when we send an invite via email, many people can see … READ MORE

The way I see it, we make a deal with our patients. We agree to fully protect your privacy, give you a chance to share your opinions and experiences, and … READ MORE

We love our patients! When you complete an interview or survey, we want to make sure you are paid. We are proud that we’ve paid over 4.1 million dollars to … READ MORE