AKU Blog

  • The Campaign for a Year of Rare Diseases

    Date: 11-Nov-2014

    Eurordis has recently launched a campaign and petition to make 2019 the official European Year for Rare Diseases. Sorsha joined their webinar to find out more about the campaign. In this week’s blog she talks about what she learned, and why it is valuable for rare disease groups to get inv.. ...more

  • 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

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AKU Blog

Meet Maria - AKU Society Student Placement

Hi! My name is Maria and I am currently a 2nd-year student at Royal Holloway University of L.. ...more

DevelopAKUre - A History

Today's blog is written by Nick Sireau the Chair and CEO of the AKU Society, It was in.. ...more

SONIA 2 and DevelopAKUre - Results

We are delighted to announce that all the data from the SONIA 2 clin.. ...more

Sociological Study on Treatment for AKU in the UK

My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK hea.. ...more

Other Ways to Give to the AKU Society

In this week’s blog, we explain how you can donate to the AKU Society through mobile g.. ...more