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Latest News

This latest news is all about the App and your opportunity to get involved!!

 

Latest News

Latest News

We have just had another poster published at EASL's ILC (International Liver Congress).We know our work has been quoted by clinicians who are trying to improve patient care within PBC: make sure more people are on the right dose, make sure more people who are not responding to Urso can get on the right therapy for them, or have opportunities to access clinical trials.

We are using your anonymised experience to push for these changes.  We are using the App to record your answers and add them to a huge melting pot of patient experiences and outcomes, which we then use to publish what is not going well for PBC patients and where we need improvements.

For that to happen, we need you. There are already over three and a half thousand downloads of the App. It has a huge amount of tools to help you live your life each and every day with PBC. One of the things that came up on PBC Day was how patients can help themselves on a daily basis.  So come and join us. Together, we can make the changes that PBC patients need: sometimes country by country, sometimes globally. This was the way we changed the name of PBC.

The App is your opportunity to do take more control of your own daily life. It has trackers for symptoms and tests. It has the latest guidelines in Lay format.  It has self-management tools. It has the entire compendium: "Living with PBC", which is an 80 page booklet on PBC.

If you have not already downloaded the App, click here to read about the App and to learn how to download it and how to use it.

For those of you already using the App, we need you to tell us about your experience. 

We are often told about negative patient experiences: e.g. under-dosing on Urso, liver biopsies, patients not being told their liver test results (even after asking!!), patients not being part of the discussion about second-line therapies, etc.  When we raise this, we face "yeah, but... where is your evidence?" replies, which is somewhat unhelpful.

So, we are asking you. You are our evidence!!  You live and breathe this every single day. You are the ones coming out of clinical appointments, sometimes deflated or feeling ignored, still not with the knowledge you seek.  So let us together collect the evidence. Let u use what we know, what we experience, how we live to improve the situation: not only for us, but for the generations to come.

So please, please, please fill in these surveys, use the app, become the answer.

The answer is out there. We have to ask the right people the right questions. You are the right people! We need your knowledge.

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