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A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

About Us

Our organisation, aHUSUK, was formed on 10 September 2011 at a meeting at the Royal Society of Medicine, Wimpole Street in London, which was arranged by Professor Tim Goodship of Newcastle University in response to strong feelings expressed by delegates, at the Newcastle aHUS Conference in June 2011, about the need for a patient and family support group.

1 Wimpole Street

RSM Wimpole St, London.

aHUSUK is a non-incorporated charitable association run entirely by volunteers. Its trustees are either diagnosed with aHUS themselves or are closely related to someone who is.

AHUSUK’s formal objects are to:

  • help and support persons affected by aHUS, as well as their families and caregivers;
  • advance the understanding and awareness of the public and the medical profession on the causes and treatment of aHUS;
  • support the campaign for the drug Eculizumab to be made available for all patients in the  UK who need it.

 

This website will help in achieving the above aims providing  a support network for those diagnosed with aHUS and their families as well as  to provide news and information about the disease for all who have an interest in it.

 

We are not a campaign group but we provide a Patient Voice for aHUS Patients to make Health Authority Decision Makers , Politicians and the General Public  aware of the impact of the illness and its treatment. We seek for a nationally funded service to be commissioned in the UK, beginning with NHS England but also in the other countries’ NHS Organisations.

aHUSUK is registered as a Charity in England and Wales ( Reg. No. 1145935) and Scotland (SCO44262).

 

The current trustees and officers are as follows:

Emma Woodward (Chair)

Debbie Thelwell (Secretary)

Len Woodward (Treasurer)

Christine Western( Scotland)

e mail :

secretary@ahusuk.org

Website Usage

We want you to enjoy your visit to the aHUSUK website and we try to ensure that information on our 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.

We do 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. We make 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 do we 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 aHUSUK 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 aHUSUK website and its contents, are owned by or licensed to aHUSUK, or otherwise used by aHUSUK  as 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 aHUSUK 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 aHUSUK 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 aHUSUK reserves the right to monitor submissions to the site and to edit or reject any submissions.

Trademarks

All names, images, logos identifying  aHUSUK 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 aHUSUK 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

aHUSUK  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  aHUSUK 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.

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

 

A copy of our charity insurance certificate can be seen here insurance