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

First Children's AKU Workshop
08-Aug-2017

On Wednesday 26th July children with AKU from all over the country travelled to ZSL London Z.. ...more

Farewell from Rory and Robin
25-Jul-2017

In today’s blog, we hear from Rory and Robin who are both leaving the AKU Society for pastures.. ...more

Meet the patient - Antony Kelly
19-Jul-2017

In this week’s blog, we speak to AKU patient Antony Kelly. Antony has been kind enough to tell.. ...more

Farewell from Oliver
11-Jul-2017

Oliver has worked at the AKU Society for the last 7 years, and has been CEO for the last 2. At t.. ...more

Stand Up For AKU Night 2017
05-Jul-2017

On Thursday, June 29th, Robin and Lesley travelled up to Liverpool for the 2017 Stand Up For AK.. ...more