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

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