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

Meet the patient - Simon Laxon
18-Apr-2019

Today’s blog is written by AKU patient Simon Laxon. In it, he writes about .. ...more

Stand Up To AKU 2019!
12-Apr-2019

We are excited to announce that our Stand up to AKU Comedy Night is back! This year we are h.. ...more

Luton Health Awareness Event
05-Apr-2019

On Tuesday the 26th of March, our Patient Support Manager, Lesley, and Fundraising Officer, .. ...more

EURORDIS Winter School 2019
29-Mar-2019

In today's blog, CEO and Chair Nick Sireau tells us about his recent trip to Paris for t.. ...more

Rare Disease Day 2019
14-Mar-2019

Rare Disease Day is an international day designed to raise awareness to the public and those.. ...more