1) Have you joined the PBC Foundation yet? (If not, please do)
2) Have you downloaded the new PBC Foundation app yet? If not, you are missing a huge number of helpful tools, trackers, etc.
AND... you are missing the opportunity to be part of an international patient registry driving forward the inclusion of the patient experience in new clinical trials and inspiring the next generation of clinical reaearch into PBC.
Be part of the conversation!!!!
Written by
PBCRobert
Partner
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Hi Robert,
1) Yes, I joined the PBC Foundation on my way home from diagnosis. The Consultant said it'd be the best thing to do for information and support. It so was and is.
2) I downloaded the PBC App and registered as Collette advised in her vlog so we all can benefit from ongoing research into PBC. The Positive Reflections log is super-helpful. It nudges me to do any other recordings I'm able to. The entire PBC App will become more and more useful to me over time. I can now take Jess Leighton's challenge (Bear Facts issue 85) "are you ready to manage your own PBC?" Getting ready anyway.
I've had a lot of help in several ways here and directly from Collette that I wondered how I could give back. I decided to donate to PBCF whenever I'm given a cost-free service from anyone (friends as well as PBCF) because of my PBC. To make it simpler, I tried to make a very small monthly payment via the PBC F website. I've never given anything back before. Well, I entered my card details, and TC's agreed, but then nothing happened. It's maybe my error, and I'll try again now. But in case it's the system, best you know about it?
Glad to say I am signed up to both. Thank you for the help getting signed into the App. It is a useful resource as is your web site.
I have a rueful smile though - some doctors have stated that they prefer me not to go on the internet but without useful resources such as yours I would be totally in the dark and not as well as I am.
There is the internet. Then there is the internet.
The interweb is a double-edged sword. I have spent many hours of my life helping people unlearn some of the nonsense out there (as you have probably seen in my rants!! 🤣).
Hopefully we are the proverbial port in the maelstrom.
Can I download the App on to my Laptop Robert. I'm probably in the minority here but I don't have a smartphone. At almost 80 I am a bit behind with technology. Thanks.
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