AKU Society

Who we are

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 have now finished our series of three major clinical trials called 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
• Find a cure for AKU