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

Findacure Firewalk for AKU! A New Exciting Fundraising Opportunity.
18-Jan-2017

On 18th February the AKU Society will be taking part in the Findacure Cambridge Firewalk! Firewa.. ...more

Looking Forward to 2017
04-Jan-2017

With Christmas all but over and the New Year well underway, we take a look at all the exciting p.. ...more

2016 In Review
13-Dec-2016

Now that 2016 is finally drawing to an end, we thought it would be a good opportunity t.. ...more

Introducing Robin, Our New Admin and Events Officer
07-Dec-2016

Last week, we welcomed Robin, to the AKU Society team! As our new Admin and Events Officer, he w.. ...more

The AKU Society’s International Garrod Day Coffee Morning
30-Nov-2016

November the 25th is an important day in The AKU Society’s calendar. On this day, we celebrate G.. ...more