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 seven countries have joined the alliance from Australia, Canada, Germany , India, Mexico, The Netherlands and USA. We were joined by aHUS Kids Japan in 2016.
Alliance affiliates at meeting in London
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
It is simply that:
“GOOD WILL COME TOGETHER”
The alliance also agreed its Mission Statement which is:
The aHUS alliance, through the collaboration of its affiliates
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.
WE CONNECT WE INFORM WE COLLABORATE
aHUS alliance acknowledges the contribution from aHUSUK , Alexion Pharmaceuticals_ Akari Therapeutics for unconditional educational grants to help make this website possible.
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