About aHUS alliance

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.

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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

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aHUS alliance acknowledges the contribution from aHUSUK , Alexion  Pharmaceuticals_ Akari Therapeutics for unconditional educational grants to help make this website possible.

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.

Website Usage

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.

Copyright

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.

Trademarks

All names, images, logos identifying  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.

External links

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.

Jurisdiction

These Terms of Use shall be governed by and construed in accordance with the laws of England and Wales. Disputes arising here from shall be exclusively subject to the jurisdiction of the courts of England and Wales.

If any of these Terms should be determined to be illegal, invalid or otherwise unenforceable by reason of the laws of any state or country in which these Terms are intended to be effective, it shall be severed and deleted from this clause. All other Terms of Use and Terms and Conditions shall remain in full force and continue to be binding and enforceable.

aHUS alliance reserves the right to change these and any of its terms and conditions at any time by posting changes online.