The aHUS alliance Global Action is a registered incorporated charity ( 28 June 2016) .
The objectives of Global Action are to:
To do that we
CONNECT INFORM COLLABORATE
The aHUS alliance was formed on 16 February 2013* .
It was created by some national patient organisations which had sprung up around the world to advocate for all affected by aHUS.
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 .
Since 2013 another eight countries have affiliated to the alliance from Australia, Canada, Germany Japan , India, Mexico, The Netherlands and USA. Global Action created aHUS Rest of World in 2017 for emerging aHUS advocates in other countries to be a part of .
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.
Affiliates attending the Fourth Meeting of the aHUS alliance in Nijmegen on 10th November 2018
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 Global Action 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 Global Action 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 Global Action 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 Global Action 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 operate by aHUS Alliance Global Action registered as a charitable incorporated organisation in England and Wales Registration No. 1167904 click here for more information about the alliance on the Charity Commission site.
*(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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