New Survey Going Live
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New Survey Going Live

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

 

New Survey Going Live

New Survey Going Live

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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    In the latest issue of Rare Revolution Magazine, Robert (Head of Education and Development) talks about his mother Collette (CEO), her diagnosis of PBC, and how their journey through the diagnosis led him to work for the PBC Foundation. Click...