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

Duncan's Decade on Nitisinone
15-Aug-2018

The newly published results of a study held at the National Alkaptonuria Centre (http://www... ...more

Stand Up for AKU 2018
08-Aug-2018

We’re really excited about our third Stand Up for AKU Comedy Night on 3rd October. Thi.. ...more

New Research Shows Nitisinone Treats AKU
31-Jul-2018

New research has proven for the first time that a drug called nitisinone treats AKU in peopl.. ...more

SOFIA-Paediatric: New Research Study
25-Jul-2018

We have some exciting news. The AKU Society has just been awarded a £60,000 grant .. ...more

Vacancy: Fundraising Officer
18-Jul-2018

We are looking for a Fundraising Officer. The vacancy is up online (http://www.akusociety.org/vac.. ...more