Hi, I’m Wes Michael, President of Rare Patient Voice. I founded Rare Patient Voice in 2013 to give patients and caregivers (generally family members) a chance to voice their opinions … READ MORE
How much detail to reveal in survey invitations?
As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour. One of the biggest complaints that we get from our Rare … READ MORE
Impact of the Covid-19 Pandemic on Rare Disease Patients and Caregivers
The COVID-19 pandemic has negatively affected people from different backgrounds and all walks of life. The struggle of one particular group has gone largely unnoticed – people diagnosed with rare … READ MORE
Join Rare Disease Day 2021
On February 28, 2021, countries around the world will celebrate Rare Disease Day. What is it and why is it important? This article sheds some light on this special day … READ MORE
Is Telehealth Here to Stay?
Image credit: Unsplash We’re excited to share this post written by Ruth Claire James! The pandemic has been disruptive, but a silver lining that came out of it is how … READ MORE
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