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 affiliated from Australia, Canada, Germany , India, Mexico, The Netherlands and USA. We were joined by aHUS Kids Japan in 2016 and aHUS Poland and aHUS Rest of World in 2017.
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 upon as a core principle.
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 the rare disease atypical HUS.
So that is what the aHUS alliance’s new Global Action Website helps us do.
WE CONNECT WE INFORM WE COLLABORATE
Affiliates attending the Fourth Meeting of the aHUS alliance in Nijmegen on 10th November 2018
National aHUS patient organizations are paramount, providing insight into the issues & needs within that country.
We invite you Click Here to connect directly with national atypical HUS advocates via their website and social media, with links on this aHUS Alliance list of over 30 national patient organizations.
aHUS alliance acknowledges the contribution from aHUSUK, Alexion Pharmaceuticals_ Akari Therapeutics for unconditional educational grants to help make this website possible. Also Chemocentrix and Alnylam for their unconditional education grant support for the Symposium in Boston 2017.
The aHUS alliance complies, in what it does with Pharma , with the UK’s Association of British Pharmaceutical Industry , ABPI, Code of practice , for a copy of the guidelines click here . ( page 39 is pertinent to relationships with patient organisations).
aHUS alliance is dependent on time given by unpaid volunteers to run and operate its day to day operations. Such volunteers themselves have been affected by aHUS either as patients or parents/carers of patients.
aHUS alliance affiliates are not medically qualified and comments made in this website should not be taken as medical advice ,which should always be sought from those medically qualified to do so.
The website is operated on behalf of the aHUS alliance by aHUS Alliance Global Action registered as a charitable incorporated organisation in England and Wales Registration No. 1167904. More information can be found on the Charity Commission site by clicking on the Registration Number above.
*(click NOTES ON A MEETING HELD ON 16 FEBRUARY 2013 IN BARCELONA to read about what happened at the meeting)
Copies of the second and third meetings can be seen below:
NOTEs OF THE FOURTH MEETING OF THe aHUS ALLIANCE HELD IN NIJMEGEN ON 10 NOVEMBER 2018 ( NOT YET AVAILABLE .
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