Resources


This page provides resources for AKU patients, carers and their families. The information on this page includes leaflets about AKU and our services, impact reports, newsletters and presentations from our patient workshops.

An Introduction to Alkaptonuria (AKU) - Children's Booklet An Introduction to Alkaptonuria (AKU) - Children's Booklet (4459 KB)

Controlling Protein to Support Nitisinone Treatment in AKU - Recipe Book Controlling Protein to Support Nitisinone Treatment in AKU - Recipe Book (6984 KB)

Survey's

Breaking Down Barriers Survey Breaking Down Barriers Survey (48 KB)

AKU Society Leaflets

We regularly produce leaflets with the latest information about services available for AKU patients and carers. Please check back regularly for new leaflets and information.

National AKU Centre Leaflet National AKU Centre Leaflet (4921 KB)

AKU Society Leaflet AKU Society Leaflet (3371 KB)

What is AKU Leaflet What is AKU Leaflet (1852 KB)

 

Annual Review 2016

Our annual review showcases our work and highlights our key achievements:

AKU Society Annual Review 2016 AKU Society Annual Review 2016 (4003 KB)

 

Newsletters

We post regular newsletters to our UK supports, keeping them updated on our news and work. You can access our most recent newsletters below:

 

Spring Newsletter 2017 Spring Newsletter 2017 (1901 KB)

Winter Newsletter 2016 Winter Newsletter 2016 (1586 KB)

Summer Newsletter 2016 Summer Newsletter 2016 (6360 KB)

 

Autumn Newsletter 2016 Autumn Newsletter 2016 (6048 KB)

 

Spring Newsletter 2016 Spring Newsletter 2016 (6087 KB)

 

Winter Newsletter 2015 Winter Newsletter 2015 (2593 KB)

 

Autumn Newsletter 2015 Autumn Newsletter 2015 (3267 KB)

 

Spring Newsletter 2015 Spring Newsletter 2015 (3062 KB)

 

International Patient Workshop Presentations

On 20th April 2016 we held our first International Patient Workshop in Liverpool, where AKU patients attended from 13 different countries. You can download the presentations from the workshop below:

Pete Moore - Pain Toolkit Pete Moore - Pain Toolkit (19315 KB)

Dr Andrew Jones - Chronic Pain in AKU Dr Andrew Jones - Chronic Pain in AKU (3133 KB)

James Moore - Mental Health in Long-Term Conditions James Moore - Mental Health in Long-Term Conditions (4434 KB)

Shirley Judd - Diet and AKU Shirley Judd - Diet and AKU (2150 KB)

Hannah Shepherd - Gait Analysis in AKU Hannah Shepherd - Gait Analysis in AKU (807 KB)

Prof Gabor Barton - Gait Analysis in AKU Prof Gabor Barton - Gait Analysis in AKU (2556 KB)

Dr Adam Taylor - Research into AKU Dr Adam Taylor - Research into AKU (1274 KB)

Sophie Taylor and Nadia Burgess - Physiotherapy in AKU Sophie Taylor and Nadia Burgess - Physiotherapy in AKU (3628 KB)




AKU Twitter

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