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.

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The AKU Society - printable The AKU Society - printable (1703 KB)

What is Alkaptonuria - Printable What is Alkaptonuria - Printable (2208 KB)

How AKU is Inherited printable How AKU is Inherited printable (922 KB)


 

Impact report 2017

Our 2017 Impact Report showcases our work and highlights our key achievements:

AKUS impact 2017 AKUS impact 2017 (13019 KB)



2nd International Patient Workshop 2018


Our international workshops provide vital support for AKU patients all around the world. Here are the presentations from our most recent workshop, held in Liverpool in April 2018.

AKU Clinical Studies 2018 - Prof Ranganath AKU Clinical Studies 2018 - Prof Ranganath (32767 KB)



AKU Pain 2018 - Andrew Jones AKU Pain 2018 - Andrew Jones (1794 KB)



Alkaptonuria Research in Liverpool -Jim Gallagher Alkaptonuria Research in Liverpool -Jim Gallagher (15503 KB)



Developing strategies to lower elevated tyrosine in the AKU mouse model - Juliette Hughes - Developing strategies to lower elevated tyrosine in the AKU mouse model - Juliette Hughes - (4322 KB)



Food for Health in AKU workshop 2018 - Shirley Judd Food for Health in AKU workshop 2018 - Shirley Judd (91 KB)



Genetics of AKU - Dr Lynn Greenhalgh Genetics of AKU - Dr Lynn Greenhalgh (3963 KB)



Hannah Shepherd - Gait Hannah Shepherd - Gait (80293 KB)



Laser based tech - Dr Jemma Kerns Laser based tech - Dr Jemma Kerns (5911 KB)



Nutricia AKU presentation Nutricia AKU presentation (6504 KB)



Physiotherapy AKU Physiotherapy AKU (0 KB)



Reece Edmends - Communications and Fundraising Reece Edmends - Communications and Fundraising (1906 KB)



Self-Management and Joint Pain - Martin Lau Self-Management and Joint Pain - Martin Lau (13816 KB)



Tanisha Spratt - PhD Tanisha Spratt - PhD (334 KB)



Vitaflo AKU society meeting_April18 (1) Vitaflo AKU society meeting_April18 (1) (4684 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)





AKU Twitter

AKU Blog

The Edinburgh Half Marathon.
20-Jun-2018

The Edinburgh Marathon Festival (https://www.edinburghmarathon.com/) is the second biggest r.. ...more

AmazonSmile
13-Jun-2018

The AKU Society has signed up to AmazonSmile. AmazonSmile is an affiliate marketing serv.. ...more

RCN Congress 2018
06-Jun-2018

The Royal College of Nursing (RCN) Congress (https://www.rcn.org.uk/congress) is the biggest.. ...more

AKU Society at ECRD Vienna
30-May-2018

A rare disease is defined by the European Union (EU) as affecting fewer than one in 2,000 pe.. ...more

Welcome to our New Trustees
23-May-2018

You might have noticed that there have been some recent changes to the board of trustees. He.. ...more