Information For International Patients aimAKU aimAKU is the patient support group for AKU patients and their families in Italy. Access their website here. AKU Society APAC The AKU Society of Asia-Pacific is the patient support group for AKU patients and their families...
Patient Communities Rare disease patients often report feeling lonely and isolated due to the lack of awareness and understanding surrounding their disease. Patients are sparsely located all over the world and it can be difficult to identify and connect with one...
Contact the Counsellors If you are interested in counselling, or have any questions, please contact counselling@akusociety.org or 01727 752147. If emailing, please check your spam/junk folder if you haven’t received a reply after 5 working days. If phoning...
Counselling FAQs How long is a session for, and how often? Usually 50 minutes, but this may be shorter if you are feeling unwell or recovering from treatment. The number and timing of sessions will be agreed between you and your counsellor at the initial appointment....
Nitisinone Nitisinone Nitisinone is now officially licensed to treat AKU in the European Union. In the UK, patients who attend the National AKU Centre are prescribed 2mg daily.¹ Clinical research has shown that that nitisinone reduced HGA levels by up to 95%.² From...
