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

Eurordis Digital School & RCGP Annual Primary Care Conference 2019
08-Nov-2019

Eurordis Digital School At the start of the month Ciarán our Communications Manager .. ...more

One Month to Go until Garrod Day!
25-Oct-2019

We are only one month away from Garrod Day! On the 25th November, we celebrate the birthday of Si.. ...more

Garrod Day Coffee Morning: Tips for a Successful Coffee Morning
27-Sep-2019

We are busy preparing for our annual Garrod Day Coffee Morning on the 25th of November... ...more

AKU Society upcoming events in Winter 2019
12-Sep-2019

It's another busy few months here at the AKU Society. We are travelling all over Europe to r.. ...more

Get Involved In Garrod Day 2019
06-Sep-2019

It’s that time of year again; our annual Garrod Day Coffee Morning is on the 25th of N.. ...more