The Alkaptonuria (AKU) Society is committed to providing quality, transparent information to all patients, caregivers, medical professionals and members of the public who are affected by the rare disease alkaptonuria.  Where applicable, all information produced by the AKU Society will be objective, accurate and will include relevant and up to date information about AKU and AKU research. 


Editorial principles


  • Any content produced by AKU Society will be accurate and balanced, with references to sources and where applicable will outline any information that is opinion or conjecture. 
  • We will strive for objectivity and will follow an impartial and evenhanded approach to all content. We will reflect any uncertainty or doubt and will allow a platform for varying opinions.
  • We will be open and transparent with our readers and allow them to have input on our content through user feedback and prepublication reviews. We will deal with complaints fairly and       change any mistakes as quickly as possible. The AKU Society’s Editorial Policy will be available to all readers upon request. 
  • The AKU Society will treat user’s privacy with the utmost importance. We will not share personal or medical information without prior and adequate consent unless legally required to do so. 
  • We will be open and honest about any conflict of interest should it occur. We will publish no information that has been sponsored by another organisation and will inform readers if any author has a commercial interest in the information they are producing. 



The Information Standard 



 The Information Standard is an initiative supported by the Department of Health that is designed to improve the quality of health and care information that is available to the public. 
It was set up to ensure that all information that falls within its scope is clear, accurate, evidence based, up- to-date and easy to read for its target audience. All members of the Information Standard have had to undergo a rigorous assessment of all its publicly available health and care information to ensure that it meets the strict principles of the Information Standard. 
In April 2017, The AKU Society was proud to become a member of the Information Standard. We will place the quality tick mark on all printed material within the scope of the Information Standard and will insert the logo in our website's footer. 

This marks shows readers that our information can be trusted. 

Fundraising information and user-generated information is excluded from the scope of the Information Standard. 

The AKU Society shall hold responsibility for the accuracy of the information they publish and neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for costs, losses or direct or indirect damage or costs arising from inaccuracy of information or omissions in information published on the website on behalf of AKU Society.

For more information on the Information Standard, to receive a copy of our reference list or to see out Information Productions system, please email [email protected].


Published: 02/06/17            Next Review Date: 02/06/19
http://www.akusociety.org/our-information



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AKU Blog

Hannah Shepherd's Everest Story
15-Nov-2017

Here at the AKU Society we are very lucky to have so many talented and dedicated people working .. ...more

Introducing Reece: Admin and Communications Officer
07-Nov-2017

Last week we welcomed Reece to the AKU Society’s team in Cambridge. As Admin and Commu.. ...more

A Patient's Perspective: Best Practice 2017
03-Nov-2017

On 18th and 19th October, Lesley, our Patient Support Manager, and Carol, one of our AKU pat.. ...more

Meet Leanne Evans, the NAC's new Data Coordinator
25-Oct-2017

Last Month the National Alkaptonuria Centres' new data controller, Leanne joined the NAC team. H.. ...more

A Step for a Step…Everest Base Camp Climb!
12-Oct-2017

So, me (Hannah from the gait lab) and my friend Steven have decided to take on the .. ...more