Two questions: 1) Have you joined the PBC... - PBC Foundation

PBC Foundation

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Two questions

PBCRobert profile image
PBCRobertPartner
20 Replies

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!!!!

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PBCRobert profile image
PBCRobert
Partner
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20 Replies
Kate50 profile image
Kate50

Hi Robert , struggling to sign into the pbc app, it is saying I need a reset code that is sent to my email but I haven’t received anything

PBCRobert profile image
PBCRobertPartner in reply to Kate50

That old chestnut!!

We have found that many times the reset code ends up in the junk or spam folder. Please check that.

The other thing we have found is that sometimes people do not have the correct email address registered with the Foundation.

Alternatively, you can speak with me directly and I can manually reset your password.

I hope that helps,

Robert.

Kate50 profile image
Kate50 in reply to PBCRobert

I will check both things and get back to you if it doesn’t resolve it, thanks for your quick response 👍🏻😘

Kate50 profile image
Kate50 in reply to Kate50

Hi Robert, so tried both it is not in my spam folder and when I try to sign into pbc foundation it says my password has expired 🙁

PBCRobert profile image
PBCRobertPartner in reply to Kate50

The email is only operational for 1 hr (for security) so ask again and it will send a new email.

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.

Thank you for your support.

PBCRobert profile image
PBCRobertPartner in reply to

1) this makes my heart sing. We face ao many problems so to hear this as beat practice is just amazing!!

2) fantastic. Well done and thank you.

in reply to PBCRobert

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?

in reply to

user error - system works!

jane1964 profile image
jane1964

Hello is the app available for Android phones or just apple?

PBCRobert profile image
PBCRobertPartner in reply to jane1964

Both. Search PBC Foundation in both app stores.

jane1964 profile image
jane1964 in reply to PBCRobert

Thanks I will get it sounds good.

butterflyEi profile image
butterflyEi

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.

great job PBCRobert and team

PBCRobert profile image
PBCRobertPartner in reply to butterflyEi

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.

kiwivivr profile image
kiwivivr

So, above you have written OBC. This is a typo or a different app?

PBCRobert profile image
PBCRobertPartner in reply to kiwivivr

Whoops!! I am on my mobile. I shall try to amend.

kiwivivr profile image
kiwivivr

Lol. Happens. Im convinced there is a auto rule somewhere that randomly changes letters as soon as sent is pressed.

alpha3 profile image
alpha3

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.

PBCRobert profile image
PBCRobertPartner in reply to alpha3

I wish you could. Let me see what can be done. I know it can be downloaded onto tablets, iPads, etc.

alpha3 profile image
alpha3 in reply to PBCRobert

Thankyou Robert

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