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

Duncan's Decade on Nitisinone
15-Aug-2018

The newly published results of a study held at the National Alkaptonuria Centre (http://www... ...more

Stand Up for AKU 2018
08-Aug-2018

We’re really excited about our third Stand Up for AKU Comedy Night on 3rd October. Thi.. ...more

New Research Shows Nitisinone Treats AKU
31-Jul-2018

New research has proven for the first time that a drug called nitisinone treats AKU in peopl.. ...more

SOFIA-Paediatric: New Research Study
25-Jul-2018

We have some exciting news. The AKU Society has just been awarded a £60,000 grant .. ...more

Vacancy: Fundraising Officer
18-Jul-2018

We are looking for a Fundraising Officer. The vacancy is up online (http://www.akusociety.org/vac.. ...more