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.…
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.…
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…
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…
Another year has ended for those affected by aHUS. For some sadly it would have proven to have been their last. For others it has been the beginning of the…
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…
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 ?…
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…
During the first aHUS Awareness Day activities in 2015, Professor Bernard S Kaplan of The Children's Hospital of Philadelphia wrote a tribute to Prof. Conrad von Gasser and a brief…