OUR PURPOSE

Working together so that good will come to aHUS patients and their families everywhere.

At aHUS alliance Global Action, we have no doubt that the aHUS insights we give today will benefit all current, and, yet to experience, patients, so their lives will be better in the future.

We are few working for the few living with this very rare disease, international volunteers who provide authentic patient voices through our personal experiences as patients or aHUS family caregivers.

OUR HISTORY

Dedicated aHUS patient advocacy began to emerge in nations around the world just over ten years ago. Inevitably strong links were formed between some national groups which led to them meeting in Barcelona, Spain on 16th February 2013.

At that meeting a belief that there could be a great benefit from working together across the world. A list of collaborative aspirations was drawn up. On Rare Disease Day 2013 an aHUS alliance was announced on the Rare Connect platform.

Although not a formal organisation there was a will to share knowledge and build a structure for a global aHUS Patient Organisation of “aHUS organisations”. In time the six founding affiliates were joined by others around the world as it grew. More and more best practices for raising aHUS awareness and accessing effective treatment were shared.

By 2015 the aHUS alliance wanted to do more to make their presence known. That year an aHUS awareness day was designated for the first time. A decision was also made to have our own website. Along with the website a legal entity was needed, and the aHUS alliance Global Action was the result.

aHUS awareness day and our website remains at the core of our global patient advocacy outreach to aHUS patients everywhere.

Now we are an aHUS organisation that has direct links with those living with aHUS around the world. We have become a source of aHUS knowledge for them to assert their own empowered personal advocacy.

OUR STRATEGY

What we do.

All that aHUS alliance Global Action does is rooted in the founding affiliates aspiration list which is to :

  • Promote awareness of aHUS,
  • Work with international aHUS researchers,
  • Support newly emerging national patient groups

How we do it.

We are continually searching for ,welcoming, connecting with and listening to aHUS stakeholders and through that, over the years, have gained a broad understanding of the wider aHUS community and helped harness its voice to inform. We collaborate with those with shared interest because we also recognise the mutual benefits from such actions. As an incorporated registered charitable we understand legal duties and compliance too, and act as a corporate entity, rather than as individuals, and fully recognise and respect those boundaries.

WE CONNECT – WE INFORM – WE COLLABORATE

OUR FOCUS

First and foremost our team of international volunteers focus on aHUS public patient advocacy. We create original articles and social media assets to raise aHUS awareness through up-to-date news about aHUS disease research, treatment developments and patient activity from around the world. We participate in and undertake our own aHUS research. We set the aims and purpose of an annual aHUS Awareness Day, held on 24 September each year. We have an aHUS ‘Rest of the World’ initiative to encourage and support patient advocacy development. We talk at conferences and symposiums and enter dialogues with health policy decision-makers.

OUR PRIORITIES

Our activities may change but our priorities are to reflect what matters to aHUS patients and with a clear aHUS Patient vision:

When enough aHUS awareness helps everyone in the world get affordable access to the right treatment they need to be cured and be normal, that will be a good day.

 

OUR PEOPLE

USA. Family caregiver since 2003, active in creation of aHUS websites and assets since 2009. Contributing author for 2 publications, original content for the atypical HUS global community (articles, resources, images, social media platforms). Background in Education (Science, Math), Certification for classroom and School Administration.
Linda L.G. Burke
India. aHUS Patient. On Dialysis since 1997 due to lack of access to a complement inhibitor. Co-Founder of NephroPlus, India's largest Dialysis Centre network. Co-authored several peer-reviewed manuscripts. Runs a very successful blog on experiences with aHUS and Dialysis. Avid swimmer, traveller and writer.
Kamal Shah
UK. Extensive familial aHUS links. Entered aHUS advocacy in 2011-aHUSUK. Vast experience of influencing health policy for aHUS patients in the UK. Conference, TV, radio, and print appearances. Prolific writer and investigator on matters aHUS. Retired professional accountant.
Len Woodward

OUR GOVERNANCE

As a legally registered incorporated charity No. 1167904 in England and Wales our Director Trustees are bound to comply with duties and reporting obligations of a registered charity. Please click here to see our listing on the Charity Commision website.

Our governing document is the Foundation Model for Incorporated Charitable Organisations as amended and agreed by our Board of Trustees.

We lodge an annual return with the Charity Commission along with an annual report and a statement of our accounts as agreed at our Annual General Meeting. The reports for aHUS Alliance Global Action are accessible at the Charity Commission’s Register of Charities (click here) . We are registered and established as an approved charity by the UK tax authorities, as recognised by HM Revenue and Customs (HMRC).

In our relationships with Pharma, we endeavour to comply with the UK’s Association of British Pharmaceutical Industry, ABPI,Code of Practice. Page 39 of the guidelines is pertinent to patients organisations.

All of which ensures transparency and trustfulness in our affairs.

The Board of Director Trustees are also the executive and working volunteers of the charity, and are all unpaid for what we do.

Important to the Board of Director Trustees is the sustainability of the charity into the future.

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.