AKU Blog

  • The Importance of Low Protein: A Seasonal Recipe

    Date: 06-Nov-2014

    For our patients who are on the drug nitisinone, keeping to a low protein diet is very important. In this week’s blog we introduce you to a helpful website, where you can find a great low protein seasonal treat to make at home! Adapting to Low Protein Evidence so far shows that tak.. ...more

  • The International AKU Workshop – From a National Coordinator Point of View

    Date: 28-Oct-2014

    Our AKU Workshop in Stockholm brought together a great range of people, from researchers to patients, to staff from the National Alkaptonuria Centre (NAC) in Liverpool. Alistair has been Coordinator at the NAC since March, and this was his first international workshop. We asked him to write abou.. ...more

  • Our Eighth AKU Workshop in Memory of Robert Gregory

    Date: 22-Oct-2014

    On Thursday 16th October our Eighth International Workshop on AKU was held in Stockholm, Sweden. Just the day before, on Wednesday 15th October, we received the news that Robert Gregory, co-founder of the AKU Society, and himself an AKU patient, had sadly died. In this week’s blog we take .. ...more

  • Findacure Workshop - Managing a Small Rare Disease Patient Group

    Date: 17-Oct-2014

    On 12th September, Findacure held a workshop at the Royal College of Nursing in London on how to manage a small rare diseases patient group. (http://www.findacure.org.uk)Our own CEO and Chairman, Nick Sireau, spoke on his experience managing the AKU Society. In this week’s blog we he.. ...more

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Stand Up To AKU Comedy Night - Liverpool 2019

Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Wate.. ...more

RCN Congress May 2019

The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more

AKU Society Brazil - Flavia at the NIH

Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more

RE(ACT) Congress America 2019 - Toronto

This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more

Donating to us via Facebook

Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people o.. ...more