Helping the cause.: Is thete information. We... - PBC Foundation

PBC Foundation

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Helping the cause.

My-life profile image
6 Replies

Is thete information. We can put at doctors office or something to give them this site?

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My-life profile image
My-life
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6 Replies
EileenUSA profile image
EileenUSA

pbcfoundation.org.uk

Hi,

you should join the PBC foundation ( they are the sponsors of this support forum). Link to their site is above.

Go to the PBC foundation- link above. ( it's a separate membership from this peer support group)

You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.

They have leaflets/brochures etc. .

Hope this helps.

My-life profile image
My-life in reply to EileenUSA

Yes thank you. Would love to help.

butterflyEi profile image
butterflyEi

Which country are you in My-life ? At my surgery in the UK there is a notice board where information can be displayed after agreement with the administration office. The PBC Foundation has leaflets for patients and doctors, you can as EileenUSA has said get this information from the their web site.

My-life profile image
My-life

United states. They had no pamphlets at my doctors office.

GrittyReads profile image
GrittyReads

If you get leaflets and posters via the 'PBC Foundation' as already suggested, you could also pin them up anywhere that allows it: supermarkets, general notice boards etc. Also, ask friends to blog/email about it - and to ask their friends to blog/email. The trouble with PBC is that it is very rare - and it mainly (but not only) occurs to middle-aged women ... [ie the group that is generally ignored: eg:just consider the way endometriosis is ignored in most women, and that's quite common and in young women!]. So, in GPs' surgeries it will be competing with much more common issues, so you might want to check back and renew any posters.

A good idea might be to just tell everyone at every group you belong to, or wear a badge, or give a talk at the WI. Actually, getting the WI on board for both Endo and PBC would be a good idea... Good luck whatever you do, you've spurred me to be more active.

Take care.

My-life profile image
My-life

It took me a year to get a diagnoise. Would they help with gas money?

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