Are you looking to set yourself a challenge or get out for a good walking on International PBC Day?
If so we have got good news for you.
The Kiltwalk has gone virtual and will be running over the weekend of the 11th – 13th of September
Why not register to take part on behalf of the Foundation.
Collette and Linda will be walking up and around Arthurs seat on Sunday the 13th of September, feel free to come along and join us, we will be starting at the ice cream van opposite the car park at 2.30pm.
Good news is you do not have to be in Edinburgh to take part in this years Kiltwalk event. You can set yourself a walk or cycle challenge in your local park or get together with your local group or Friends.
You can take on any Kiltwalk Inspired challenge you wish – go for a walk (of any length), a cycle, jump on a trampoline or even a family scavenger hunt!
Please get behind the Foundation and donate what you can or better still join the team and help raise as much as we can.
The PBC Foundation was started in 1996 by Collette Thain, MBE. The decision to create a charity specifically for PBC came about because it was recognised that the needs of those with PBC and their families were not being met; a large number of PBC sufferers, who, when contacting us for help, talked about their experiences which covered a wide variety of problems relating to PBC.
The type of problems experienced were varied, there was a scarcity of information for sufferers, GPs, health professionals, lack of care – eg sufferers not permitted to attend hospital for regular check-ups, not permitted to attend transplant assessment centres in late stage PBC, attending consultant who admitted to having little or no knowledge of PBC. Resulting from the problems of misdiagnosis and lack of information, there was fear, despair, depression, isolation, confusion, and guilt.
It became clear, therefore, that for PBC specifically three major areas needed addressing:
The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by Primary Biliary Cholangitis, a rare, progressive and autoimmune liver condition with no known cause or cure.
Our aims and objectives are:
• To provide PBC sufferers with accurate, up-to-date information on PBC, its implications, and treatment, in the form of our publications, including our compendium ‘Living with PBC’, our quarterly magazine ‘The Bear Facts’, our website and our recently released app
• To provide support to all affected by PBC – including patients, their carers, concerned relatives, and friends – in the form of a helpline, a regular publication, regional meetings within PBC sufferers’ local community, and a regional volunteer network throughout the UK
• To educate medical practitioners about PBC, and to raise awareness of the services we provide, by distributing detailed information on PBC at medical events throughout the country, and by conducting extensive outreach work
• To support research into PBC to find a cause/cure
Core services we provide free of charge to all members
• 24 hour helpline
• 20 page quarterly publication, compendium ‘Living with PBC' , patient and GP leaflets
• Regularly updated website for patients and healthcare professionals
• PBC Self- management app
• UK volunteer peer support network
• UK wide self- management workshops
Outcomes of your support and funding;
• PBC sufferers will more likely live longer, healthier and more positive lives.
• PBC sufferers will be better able to self-manage their condition, which will lead to an improved quality of life.
• PBC sufferers will feel less isolated, through increased involvement and interaction within their communities.