About the organization
Basic details : 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.
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.
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.
Mission : Transform the lives of AKU patients; through patient support, community building and medical research.
Vision : The scope of the Society’s work also involves providing support for patients in between their visits to the NAC or the clinical trial, in the form of patient visits, specialist workshops, online patient communities and social media updates.