YOU’VE GOT aHUS!

The third article in the series about the aHUS Diagnosis Process is published today. Rare Disease Day 2022

The article covers the experience of aHUS patients in specialist care up to being told about their aHUS diagnosis.

The full article can be read at the bottom of this blog.

The study has been carried out by Global Action in response to patients saying that diagnosis is an important topic for aHUS research . Clinicians and patients say diagnosis can be done better to avoid the harmful effects of delayed diagnosis or misdiagnosis.

227 aHUS patients from around the world took time complete an extensive questionnaire and the published reports relate those experiences and reflect the reality of what happens. Such insights will be of help to newly diagnosed patients and their families.

All patients can compare their experience with others and maybe reconcile what happened or did not happen to them.

This is the first research of its kind. The articles explains aHUS in simpler terms to aid understanding of what happens when people are in the midst of a medical crisis.

It addresses what could be done better? Possibly!

In many ways it taps in to a kind of “aHUS zeitgeist” at the beginning of a decade which will challenge what we have known as something called aHUS and bring more treatment options. The 2020s is going to be decade of opportunity for aHUS people worldwide.

This research can be of help to aHUS clinicians and Global Action has received very favourable feedback from some of them so far. The insights should also be of interest Pharma.

The first article can be seen HERE and the second HERE.

There will at least one further article to complete the series which will focus on the patients’ experiences and how it affected patients physical and mental health outcomes after being told “You’ve got aHUS!”

Direct Link to the pdf of our Third Report: https://bit.ly/aHUS3rdReport

Article No. 485

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