Volunteer/Research Opportunities for People with PMR and/or GCA

I just attended the webinar I posted about previously. The webinar was sponsored by the Global Healthy Living Foundation. During the webinar they mentioned that they have an app for research about chronic diseases, and also for tracking symptoms. I just checked out their website, and it looks interesting. The app runs on Android, IOS, and in Windows as a website. You have to enter some personal information and medical information if you want to participate. They don't ask for SSN. You can follow up on this if you're interested. They research several diseases, including PMR and GCA. The website is https://patientspot.org, or you can look for the PatientSpot app in the Google Play or Apple stores.

The Vasculitus Foundation does research on vascular diseases including GCA (PMR is not considered to be a vascular disease). Their research organization is the VPPRN (https://vasculitisfoundation.org/treatments-research/patient-powered-research/). They do biannual surveys of patients with vascular disease where they track relapses and other information. They also do clinical trials and research surveys for people with vascular diseases.

For people who are not familiar with these organizations, these are two opportunities to contribute to research about your disease(s).