In this update, join us as we celebrate Living with Primary Sclerosing Cholangitis community’s anniversary. And check out the kind of information that we’re passing along to improve the lives of our members. We’d also like to share some updates about Patreon and our patient registry project.
Happy Anniversary, Living with Primary Sclerosing Cholangitis!
The Living with Primary Sclerosing Cholangitis community turned 11 this month!
5 tips on how to help patients better manage inclusion body myositis
Check what we’ve shared to members of our Myositis Support community to help them better cope with this condition.
Donations via Patreon
As of August 1, we have already raised 1444.63 USD from members’ contributions through Patreon. We are also working on a system for the collection of video testimonials to be included in the newsletter for patrons.
Patient Registry Project
Last year, we started experimenting on building a proof-of-concept patient registry web site for Ben’s Friends. We wanted to learn more about clinical trials and see if we have a place in it. This project has moved forward nicely. We have created a version with real functionality, and not just the prototype we initially intended to build. At present, we are beta-testing the current version.