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 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 .
The aHUS alliance want you to enjoy your visit to its website and it tries to ensure that information on its site is accurate, complete and up-to-date.
All information contained on this site is intended for general educational, informational and helpful purposes only. It is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any one treatment.
The aHUS alliance does not knowingly reproduce inaccurate or libellous material. Individuals and organisations referred to by us do not necessarily endorse this reference. Always seek the advice of your consultant, GP, or other qualified health professional before starting any new treatment. Medical information changes rapidly. The aHUS alliance makes efforts to update the content on the site but some information may be out of date.
Without prejudice to your statutory rights the site and all information, text, names, images, pictures, logos, links and icons and other materials (without limitation) are provided ‘AS IS’ and on an ‘IS AVAILABLE’ basis without representation warranty or endorsement, express or implied. In particular, the information provided on this site does not constitute business, medical or other professional advice, and is subject to change. Nor does the aHUS alliance guarantee that use of this site will be uninterrupted or error-free, or that the site and its servers are free of computer viruses or bugs.
In no event will the aHUS alliance be liable to any person for any injury, damage or loss that may arise from the use of any information contained in our site or products advertised on our site, including, without limitation, indirect or consequential damages, or any damages whatsoever arising from use or loss of use, data, or profits, whether in action of contract, negligence or other tort, arising out of or in connection with the use of the site.
All rights, including copyright and database right, in the aHUS alliance website and its contents, are owned by or licensed to aHUS alliance, or otherwise used by aHUS alliance permitted by applicable law or the copyright holder. You may not copy, reproduce, republish, download, post, broadcast or transmit any text, images, graphic, logo, button, icon, image and their selection and arrangement thereof, and any underlying source code and software, for any commercial or public purpose without prior written permission from aHUS alliance or the copyright holder or in accordance with current Copyright, Designs and Patents Acts. You may not adapt, alter or create any of the material or information in this site or use it for any other purpose other than for your personal non-commercial use. You agree to use this site only for lawful purposes.
The aHUS alliance reserves the right to use for its own purposes any material submitted to the site, including text and images, either on the site or in any other form, including for publicity purposes. The aHUS alliance reserves the right to monitor submissions to the site and to edit or reject any submissions.
All names, images, logos identifying the aHUS alliance and aHUS Awareness Day, #aHUSSept24 are proprietary marks. All third party brand, product, service and company names contained on this site are the trademarks, service marks and trade names of their respective holders. The aHUS alliance does not give permission for their use by any person other than the holders. Any such use may constitute an infringement of the holders’ rights.
aHUS alliance has endeavoured to assess the quality of external sites but does not represent, warrant, endorse or hold responsibility over any external sites that may be linked to and from this site. Any external site that you visit by clicking through a link on this site is outside the control of aHUS alliance and you visit entirely at your own risk.
aHUS alliance reserves the right to change these and any of its terms and conditions
at any time by posting changes online.