Our Mission

Transforming the lives of AKU patients; through patient support, community building and medical research

Patient Support

Living with AKU can be challenging, with loss of mobility and pain affecting patients’ physical and mental health. This is why it is so important for us to provide support to our patients and their families, helping them come to terms with the diagnosis and best manage their condition.

‘The peer to peer support has really made a different for me – helping to keep the isolation less’

Aims:

  • Provide reliable, up-to-date information about AKU
  • Run annual patient workshops
  • Offer individual home support visits
  • Provide ongoing support at the National AKU Centre (NAC) and for DevelopAKUre patients

Community Building

Living with a rare disease can be isolating, as patients are sparsely located all over the world. Here at the AKU Society, we work hard to unite AKU patients and build a strong community. 

‘It is wonderful to know that you’re not alone and there are others that you can learn from and there are people that care about you’

Aims:

  • Encourage connections through our online communities
  • Help raise awareness of AKU among the general public and healthcare professionals
  • Establish and support AKU sister societies in other countries
  • Unite AKU patients around the world through international patient workshops

Medical Research

Our ultimate goal is to find a cure for this debilitating disease. We are currently running an international clinical trial, DevelopAKUre, measuring the effectiveness of nitisinone, the first potential treatment for AKU.

‘These trials have given us great hope. This treatment could completely change our lives. We’re one step closer to a cure.’

Aims:

  • Form scientific partnerships
  • Understand and treat the disease
 
 



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AKU Blog

Edinburgh Half Marathon: Meet The Runner
21-Feb-2018

The AKU Society is thrilled to introduce you to Jamie Rumbelow. Jamie is running the Edinbur.. ...more

A Tyrosine Study with Dr. Milad Khedr
14-Feb-2018

Dr. Milad Khedr is a doctor at Royal Liverpool and Broadgreen University Hospitals. He is st.. ...more

Browsealoud - A New Accessible Tool For Our Website.
07-Feb-2018

To make our website more accessible to visitors with different needs, the AKU Society has in.. ...more

Meet the Patient - Bob Montague
25-Jan-2018

In this week’s blog, we hear about Bob Montague, who went to the National Alkaptonuria.. ...more

Two Months (and Three Events) with the AKU Society
16-Jan-2018

In December 2017, Reece Edmends, the AKU Society’s newly appointed Admin and Communication.. ...more