I don’t need to tell you, all anyone is talking about is COVID 19, also known as the Coronavirus. All the in-person conferences and patient events we’ve been scheduled to … READ MORE
Thank you to our patients and caregivers
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 love referrals. But read the invite carefully!
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
Not all surveys can be done on mobile devices. Please read the invites carefully!
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
Please don’t speed through our surveys!
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
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