Happy 2019! Thanks to all of our clients for helping to make 2018 a stellar year. We have grown significantly this year and wanted to share some of our milestones. We have added thousands of new patients to the Rare Patient Voice panel this year by attending hundreds of events across the country. We have increased our project management and patient advocacy teams which means we can do even more for you and your clients. We launched our new database this year which will allow patients to easily update their profiles which means we will be able to target our recruiting with even greater accuracy. We also paid patients over $900,000 dollars in 2018! It has been a good year.
With Rare Patient Voice moving in a positive direction, I want to take a moment to focus on our patients and caregivers as they are the heart of our business. As most of you know, our recruiting methodology is a bit “old school” but it has worked well for us. We sponsor patient healthcare events such as walks, conferences and symposia where we meet patients and caregivers, explain what research is, and invite them to join Rare Patient Voice. It is great to meet the patients face-to-face and hear about their journey to diagnosis. At one of the annual conferences we attend, a patient came running to our table saying “I’m a Rare Patient! I’m a Rare Patient!” and proceeded to tell us about how much she liked being part of Rare Patient Voice. Many are thrilled to participate in research because their conditions are not well understood by their friends and family. They feel valued and want to be able to help others with their condition. Others need the money for copays or rent. We also get feedback from patients after they complete a study. Here are a few comments we received this year:
- These surveys help so much financially. I can’t thank you enough for sending them my way.
- It was really nice to describe my thoughts to someone who really listened and was interested.
- I like the opportunity to share information about my son’s disorder so that it may be used to help other families.
I shared these quotes because it is easy to get lost in the numbers and forget that these are real people with complex medical conditions. I am glad that we are helping them in a small way! Have a fantastic 2019!
