Patients have been talking about the pain of XLH for years and years and decades even, but there’s been very little research into how we can manage it. That’s about to change, and you can be part of it!
Carolyn Macica, PhD, at Quinnipiac University, is undertaking research into a possible tool to help XLH patients manage their pain. The first phase involves gathering information from patients to make sure the researchers fully understand the patient experience. If all goes well, there will be an additional phase down the road to test a pain management tool, but for now, she’s looking for volunteers to answer a few questions, by way of a video meeting.
Time is of the essence, as my lawyer brain likes to say, so if you have an hour to spare this month (sooner is better than later), please contact Carolyn.Macica@Quinnipiac.edu and let her know you’re interested in participating in this research.
The flyer, with more information is below, with all the more formal explanations.
So, how about getting onto Santa’s “nice” list by volunteering an hour of your time to improve the understanding of XLH pain? Santa will even leave a ten dollar Amazon gift card in your stocking afterwards. Okay, so really Dr. Macica will email you the gift card. But either way, you’ll feel the warm glow of having done at least one good thing this holiday season!
