AKU Blog

  • Introducing Juliet: Fundraising Officer

    Date: 05-Sep-2018

    In this week’s blog, we meet Juliet, our new Fundraising Officer. Juliet will be involved in apply for funds from trusts and foundations along with organising exciting community events. All to support the vital work the charity does to help patients with AKU. .. ...more

  • Findacure Cambridge Showcase 2018

    Date: 29-Aug-2018

    In 2012, AKU Society CEO Nick Sireau (http://www.akusociety.org/new-trustees/nicolas-sireau-chairman-of-trustees) and others founded a charity called Findacure (https://www.findacure.org.uk/). Findacure helps rare disease patient groups get off the ground. The hope is that all can enjoy the .. ...more

  • Recipes Wanted

    Date: 22-Aug-2018

    This summer, we are looking to update our AKU recipe booklet. We invite patients to send in their favourite recipes, which we will adapt and add to our collection. If you have any ideas, email Lesley at [email protected] The National Alkaptonuria Centre (http://www.akusociety.org/aku-na.. ...more

  • Duncan's Decade on Nitisinone

    Date: 15-Aug-2018

    The newly published results of a study held at the National Alkaptonuria Centre (http://www.akusociety.org/aku-national-aku-centre.html) (NAC) show that a drug called nitisinone improves the health of AKU patients. They also show that it reverses a process called ochronosis, where a black pi.. ...more




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AKU Blog

Final meeting of DevelopAKUre and the 11th Scientific workshop on AKU – Siena 2019
15-Feb-2019

The AKU Society has just come back from a hectic week in the beautiful Italian city of Siena.. ...more

SONIA 2 - Last patients
22-Jan-2019

On the 18th January, the last SONIA 2 (Suitability of Nitisinone In Alkaptonuria 2) patients.. ...more

Looking forward to 2019
11-Jan-2019

Now we are all settled in after Christmas and the New Year, here at the AKU Society we would like.. ...more

2018 In Review
04-Jan-2019

A Happy New Year from Everyone at the AKU Society. Now that 2018 is well and truly behin.. ...more

DevelopAKUre SONIA 2 - Update
12-Dec-2018

We are happy to announce that two of our three SONIA 2 trial sites have now finished seeing patie.. ...more