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

Children's Workshop 2017 Preview
21-Jun-2017

On 26th July we are excited to be holding our first ever Children’s Workshop. This ev.. ...more

A big thank you to Pedwar Pawen Dog Training Club!
14-Jun-2017

Support often comes from unlikely places, but it is safe to say we never expected to receive.. ...more

Presenting National AKU Centre Research at an International Conference
07-Jun-2017

This week’s blog comes from the team at Costello Medical (http://www.costellomedical.com/).. ...more

EURORDIS Membership Meeting 2017, Budapest
31-May-2017

On the 19th- 20th May, Oliver and Ciarán travelled to Budapest to represent the AKU Socie.. ...more

RCN Congress 2017
25-May-2017

The Royal College of Nursing Congress is held each year to bring together over 4,000 nur.. ...more