PBC Patient Registry / CoRDS

[PBCCarol]

I thought I would share this video from CoRDS - we partnered with them to create our PBC Patient Registry that was launched last fall. While many of us are stuck in our houses feeling we can’t control anything in our lives, take the opportunity to enroll in this registry. If you are unsure about why you should or what a registry does to help us visit pbcers.org/patient-registry/ to learn more ! Providing patient history is critical to the search for a cure. Your journey with PBC is important whether you are a newly diagnosed patient, a long time patient or even if you were transplanted.

vimeo.com/394229336

[Della_Williams]

Hi Carol. I had enrolled already. Do we need to do this again? I don’t mind. Just asking to be sure.

Hello everyone, hope you are all stay safe. I’m hunkering down with my hunk (husband). I don’t mind being home. I’m keeping busy. Started scrapbooking again. I had started and stopped. There never seemed to be enough time. Well now is the perfect time to pick up where I left off. I came across some old pictures and it reminded me about it. Getting some books done for the kids (actually adults now but babies forever in my eyes).

Remember, you can call your doctors and schedule a telemed session and they will call you at school in place of an office visit if you have any concerns. Insurance covers it and you have a co-pay or less. I talk to my therapist weekly via Zoom through Regroup call-in number that is secure, new number every week. It’s been great talking from home and still being able to have my session with her.

Whatever you do, just don’t expose yourself by going out unnecessarily. Hopefully this will pass soon if everyone is compliant with social distancing and this nasty virus has no host to invade and keep spreading. We are not helpless. This is our way to help. God bless. Stay safe. Be well. Praying for all. ❤️🙏🥰 Ivette, Chicago

[PBCCarol in reply to Della_Williams]

No you don’t need to enroll more than once but can go in and up date your history whenever you want and they will remind you to once a year