About aHUS alliance

The aHUS alliance Global Action is a registered incorporated charity ( 28 June 2016) .

The objectives of Global Action are to:

  • promote global awareness of aHUS
  • work with International aHUS researchers
  • support newly emerging national aHUS patient groups

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.

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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).

Statement on our Outreach & Partnerships

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 operated 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. FMI on support through your charitable donation. Click Here.

 

*(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 ON THE SECOND MEETING OF THE aHUS ALLIANCE HELD ON 1 NOVEMBER 2014 IN HOPITAL GEORGES POMPIDOU IN PARIS

NOTES OF THE THIRD MEETING OF THE aHUS ALLIANCE HELD IN THE SENATE HOUSE UNIVERSITY OF LONDON On 28th JUNE 2015

NOTES OF THE FOURTH MEETING OF THe aHUS ALLIANCE HELD IN NIJMEGEN ON 10 NOVEMBER  2018 ( NOT YET AVAILABLE) .

 

Website Usage

 

The aHUS alliance Global Action 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 Global Action 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 Global Action 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 Global Action  website and its contents, are owned by or licensed to aHUS alliance, or otherwise used by aHUS  alliance Global Action 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  Global Action 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 Global Action 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 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 Global Action  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 Global Action 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 Global Action  reserves the right to change these and any of its terms and conditions

at any time by posting changes online.