PBC App press release
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The PBC Foundation is the only UK based organisation that specifically deals with PBC.

PBC App press release

 

After the success that was #PBCday2017 the PBC Foundation has cemented the UK’s place in leading the field in patient care and self-management. Primary Biliary Cholangitis (PBC) is an incurable autoimmune condition which affects the liver, with the most profound symptoms including chronic fatigue and intractable itch.  Whilst there are treatment options available for PBC, it is still the biggest single cause of liver transplantation in adult women in the UK.

With over 10,000 registered users of the Foundation’s services, in 76 countries, the Foundation has become well renowned for its innovation and for inspiring change worldwide for the betterment of patients’ lives.  An integral part of the global campaign to change the name of PBC so as to reduce stigma, the Foundation has led the way in self-management modules, developing webinars available free internationally, and led initiatives in Canada, Israel and Japan, partnering in many other countries to fight for equality in PBC services.

Their latest innovation is a free, available globally to registered service users, app designed specifically for patients with PBC to take a more active approach to their own self-management of their daily lives.  Packed full of features such as a symptom tracker, mood tracker and a tracker for their liver biochemistry results, it also includes a full compendium which informs patients of emotional, psychological and physical self-management techniques; the very latest medical information on PBC, and information on financial support, Disability Discrimination and legal aspects of living with an incurable condition.

Sponsored by Intercept Pharmaceutical’s “Practice to Policy” programme, the app is designed to empower patients to take back control living with PBC, but also enable them to be a much more informed partner in their own medical care, working with their clinical team to ensure they have access to the best possible care pathway for their own particular circumstances. Lisa Bright, President International, Intercept Pharmaceutical’s said, “People living with PBC now have an App at their fingertips to help them proactively manage their condition. Delighted that Practice to Policy was able to support this important initiative and help to make it happen.”

The app represents the kind of successful collaborations the Foundation leads, incorporating patients, industry, academia and clinicians. Professor David Jones, of Newcastle University and clinical lead of UK-PBC, said, "UK-PBC welcome the launch of this innovative app. It is really important that PBC patients fully understand their disease, play an active role in its management and develop strategies to cope with disease symptoms. The app will be an important tool in helping them to do so."

Joining the Foundation is free and you can find out more information here: www.pbcfoundation.org.uk