Global Patient Advocacy-aHUS ROW

When the six European national aHUS organisations gathered in February 2013 for the first meeting of what was to become the aHUS alliance, they listed several aspirations for the new organisation.…

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The Birth of HUS(s) 65 years ago

The aHUS alliance’s mission highlights the importance of patient organisations reaching out and connecting with and supporting aHUS clinical researchers, who in turn may reciprocate. The pages of this website reflects…

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aHUS Alliance Annual Report

The aHUS alliance global action is an incorporated charitable organisation registered with the Charities Commission in the UK. It has to comply with reporting rules and each year a report…

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Does the aHUS alliance add value?

Adding value in patient advocacy is obvious. Or is it? Those involved in patient advocacy constantly ask themselves “Am I achieving anything?” . They know they are doing things, but…

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TRY THE CHRISTMaHUS QUIZ

It is 12 days to  Christmas and soon more time will  become available to relax and unwind, so why not do the opposite  and take the ChristmaHUS Quiz challenge  ?…

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Treatment for all with aHUS?

A question which featured a number of times in the Rare Disease Day video  was about access to complement inhibitors for everyone with aHUS who needs them. This is a…

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