So, really simply this is a forum technically hosted and owned by "Health Unlocked". The PBC Foundation hosts and moderates this particular forum on PBC. Whilst trying to keep it to patients speaking to each other, occasionally we will input with extra information or any corrections that may be helpful but we try not to be too hands on in here: for us, this is all about peer-to-peer support.
So, now we know this is hosted by the two organisations. However, it is important that you know signing up in here is not the same as signing up to the PBC Foundation.
The PBC Foundation is the biggest PBC-specific Patient Support Organisation in the world, supporting over 13,000 patients in 76 countries around the world. It has a number of services including website, helpline (which can use Skype, Whatsapp and Facetime for those not in the UK), a quarterly magazine (available in print or email), a self-management app, conferences, workshops, etc.
We have lay version of EASL guidelines, we also co-author and review other guidelines and academic papers and abstracts on PBC.
We wanted to highlight this so that you can get the best of both worlds: peer-to-peer support here *and* the free, up-to-date, accurate, and peer-reviewed medical information and support from the Foundation itself.
Those who have joined the Foundation already may want to comment here on what they have gained but the testimonies are incredibly powerful. In November, we can share with you an abstract which will be presented at AASLD Liver Meeting in San Francisco.
Written by
PBCRobert
Partner
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Totally agree Robert. I joined PBC Foundation 18years ago before there was Health Unlocked. However, the waters became muddied when HU appeared. All I can say is the best way is use them both. One for gaining great information and advice and the other for newbies to find out where to turn to and for folks to vent. (Sometimes it is reqd) 😂. I usually advise newbies to contact the Foundation. HU is a safe haven for sharing emotions, compare notes support from likeminded sufferers. A chat room if you like. I will continue to use both and am very grateful for both.😌
Hi Robert. Thanks for the clarification. I have benefited both from this forum and the Foundation. Peer to peer is useful to help you put your own circumstances into context and potentially in touch with others in your geographic area around the globe. However, for informed, accurate, up to date and relevant information the PBC Foundation is the key referral point. Help I've had from the Foundation thankfully debunked scary info on the web and enabled me to get a better understanding of my own situation when first diagnosed. Recently I attended a meeting of a local group of fellow sufferers and that was really informative and helpful. Being able to share stories face to face is invaluable and tips from others on how they deal with symptoms etc is really useful. The recent EASL in plain, easy to understand, language is an excellent piece of work and really will help everyone to be able to take control of their own set of circumstances. I'm definitely happy to be a supporter of the work you and the rest of your team do. Awrabest...
I agree. I am a member of the Foundation . I use the Foundation as a resource and the HU for support. Thanks to research I found via BearFacts I recently got a second opinion from Mass General Hospital which made me feel more confident about my prognosis and treatment, and I knew what to ask thanks to both sides. I’m grateful to you Robert and to everyone else that does this important work for our obscure and complex autoimmune disease. Thanks,
Thank you Robert a very welcome post I’am sure there are those who think Health Unlocked is the same thing as the PBC Foundation. I know they would find the benefit in joining both, I use both and the support is second to none.
I would urge everyone to join, it is a bit cloudy on how to do it from this site though, you have to go to the home page to get your details. I must say I never go to that section, I link straight in to the posts as there sent to me automatically.
Perhaps you could pin your post including the link ,it may help and I beleive the more people you can reach with the correct information the less we’ll see of the scare stories on the web especially those that scared me half to death 9 years ago. Thankfully my consultant gave me your details.
Thanks for this clear explanation Robert. I too joined Health Unlocked believing it gave me membership of PBC Foundation. I now belong to both and like others draw different things from each. Both are a lifeline to PBC sufferers as no one seems to have heard of our condition. Keep up the excellent work. Diane
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