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.’
Here at the AKU Society we are very lucky to have so many talented and dedicated people working .. ...more
Last week we welcomed Reece to the AKU Society’s team in Cambridge. As Admin and Commu.. ...more
On 18th and 19th October, Lesley, our Patient Support Manager, and Carol, one of our AKU pat.. ...more
Last Month the National Alkaptonuria Centres' new data controller, Leanne joined the NAC team. H.. ...more