Our aims

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The AKU Society is primarily an organisation that offers patient support, and scientific partnerships in order to drive forward our quest for a cure to AKU. We have grown rapidly, identifying just one AKU patient in 2003 to now more than 80 in the UK and 650 worldwide. We are increasingly interacting with patients and scientists globally, across Europe, North America and the Middle East. Indeed, our team in Jordan has identified 40 patients in a single village, including nine in a single family, which is why we are stepping up our work there. We are also increasingly interacting with industry in order to plan clinical trials of promising new treatments. 

Our aims are to:
  • Support AKU patients and their families.
  • Provide the latest high quality scientific information about AKU.
  • Recruit scientists and clinicians and to promote their research into the causes, effects and treatments of AKU.
  • Help medical professionals find the best way to support new AKU patients.
  • Ultimately, to bring together all the resources needed to find a cure for AKU.
If you are an AKU scientist, clinician, industrialist or patient, please do get in touch with Dr Nicolas Sireau, Chairman of the AKU Society, at nick@akusociety.org.