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On 16 February 2013 the aHUS alliance was born.

In the years leading up to that significant moment in  the affairs of aHUS,  national patient organisations had sprung up around the world to advocate for all affected by aHUS   and play an important role for the well being of all aHUS patients .

On 16 February 2013 in Barcelona, representatives from aHUS patient organisations from Belgium, France, Italy, Russia, Spain and UK met and agreed that there were some things that could be done better  if we worked together. It was agreed that an aHUS alliance be formed and to seek other aHUS patient organisations to join in.

The aHUS alliance was launched on Rare Disease Day 2013 as a practical demonstration of “alone  we are rare, together we are strong” !

Since 2013 another eight countries have joined the alliance from Australia, Canada, Germany , India, Mexico, ,Sweden, The Netherlands and  USA and we hope to be joined by organisations from Denmark, Switzerland and Israel and maybe more in 2016.

For more details about all aHUS alliance members ( as at 1 March 2016) go to our sister site by clicking on the logo below.


In keeping with the reason for which it was  created, the aHUS alliance’s  VISION was formally agreed at the third meeting of the aHUS alliance in London in June 2015 (featured photo is of the meeting delegates).

It is simply that


The alliance also agreed its Mission Statement which is:

The aHUS alliance, through the  collaboration of its members,

will promote  global awareness of aHUS,

will work with international aHUS researchers and,

by  supporting newly emerging national aHUS patient groups,

will bring relief and support to those affected by aHUS to save , and improve the quality of, more lives

As it has been from the beginning  the aHUS alliance is about collaborating -working together is what the aHUS alliance is built on.

But there is also a need to put those collaborations into action and we do that by  connecting with others and informing all who need to know about aHUS.

So that is what the aHUS alliance’s new Global Action Website helps us do.