This is a statement from The PBC Foundation's CEO about joining The PBC Foundation. I came across it searching for some past postings.
This could not be more true for all of us. Having access to the right information is so crucial!
So here is my appeal. Please join the Foundation. Not for me. For you. We have a website crammed full of information in multiple languages. We have a quarterly magazine sent you to physically or by email. We have an App that can help you self-manage and also help you be part of the answer to many of PBC’s questions. We have a helpline where we can help you directly with your questions, also run 24/7 for emergencies. We have leaflets and books on our website free for you to download.
We have so, so many services that can help you directly with your PBC journey: all if which are free to you, at no cost, requiring no fee. (did I mention they were free to patients??)
We have thousands of patients registered with us from over 75 countries around the world making us the biggest PBC support group out there. We have written lay guidelines for use in both Europe and US.
I have seen some of the recent discussions: here and on fb groups and I can’t help but wonder why some of these questions are being asked of other patients.
Peer-to-peer support is vital in PBC, like many rare conditions. We have worked hard to build this community here on Health Unlocked, which is the exemplification of all that is good in peer-to-peer support, and it now sits at over 8000 people.
There are questions that require opinion, or experience, but there are many questions that need the expertise of a clinician or a patient advocate. (Those already registered with the Foundation know we do a weekly webinar where you get to ask directly a world renowned PBC expert clinician your questions)
We can help.
So, please. Join us. Be part of the community. Learn what you need for your own PBC journey.
We can help. And we do.
Yours, as ever,
Robert.
pbcfoundation.org.uk
