Transforming the lives of AKU patients; through patient support, community building and medical research
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’
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’
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.’
The University of Siena (https://en.unisi.it/) is a valued member of DevelopAKUre (http://ww.. ...more
There are over 7,000 identified rare diseases. Eighty per cent of them are genetic, like AKU.. ...more
On 21st March, Reece Edmends, our Admin and Communications Officer, went to a meeting of the.. ...more
Dr. Nick Sireau is CEO of the AKU Society and Chair of Trustees. After his two sons were.. ...more