We’re excited to announce our next AKU scientific meeting on Thursday 16 October 2014.  The 8th International Workshop on AKU will take place in Stockholm, Sweden at the Hotel Ariadne. We’re kindly being hosted by Sobi, and a meeting of the DevelopAKUre clinical trial consortium will take place the following day.

A full list of speakers is available on our event page.

Here’s a little more background information on the people sharing their research with us on the day:


Our first talk is from Prof Elisabeth Holme, who works at the University of Gothenburg in Sweden. Prof Holme was involved in the very first trials of nitisinone, using it to treat hereditary tyrosinaemia type 1 (HT-1). Without this work, we may never have found nitisinone as a potential treatment for AKU!

Next is Prof Lakshminarayan Ranganath, from the Royal Liverpool University Hospital. Most of you will know Prof Ranganath – he’s one of the AKU Society experts, and leads the National AKU Centre and DevelopAKUre clinical trials in Liverpool. He will be giving an update on the clinical trials, and in particular how nitisinone interacts with tyrosine metabolism.

Dr Jean-Baptiste Arnoux, from the Hopital Necker will then speak on dietary management. Dr Arnoux is a doctor working at the French site for DevelopAKUre with many years’ experience treating patients with AKU and HT-1. Dietary management as a possible additional treatment is a key issue in AKU and Dr Arnoux will explain the benefits and possible risks.

After a short break, Dr Gabor Barton will speak on gait analysis. All patients who attend the National AKU Centre are offered gait analysis at Dr Barton’s lab in Liverpool John Moores University. Dr Barton uses special cameras and motion tracking software to detect changes in the way AKU patients walk, helping to diagnosis and possibly prevent future joint damage.


Then we have Prof Alan Boyde, from Queen Mary’s University Hospital in London, UK. Prof Boyde is an expert at imaging. He creates fantastic images of AKU bone (like the one on the right), showing the changes in structure at a microscopic level. His work has lead the team at University of Liverpool to identify bone changes, never seen before in arthritis diseases. This may lead to a new way of diagnosing both AKU and osteoarthritis.

Prof Virginia Kraus closes the morning session with a talk on osteoarthritis biomarker qualification. Prof Kraus is a world expert on osteoarthritis and works at Duke University in the USA. Her talk will look at biomarkers, which are tools doctors can use to predict future joint damage. Hopefully, these biomarkers will help us to test the effectiveness of new medications, such as nitisinone.

After lunch, we’ll hear from Prof Annalisa Santucci, from the University of Siena in Italy. Prof Santucci’s lab analyses samples from DevelopAKUre which should help to understand the effect of nitisinone in AKU patients. Her talk will focus on a new idea, that amyloid (lumps of protein which cannot be broken down by the body) are involved in AKU.

Dr Wendy Introne will then discuss her research in AKU at the National Institutes of Health in the USA. Dr Introne is a world expert in AKU and led the original clinical trials in nitisinone for AKU. She has fascinating insights into how the drug may work. Her latest research investigated how the heart is damaged in AKU, and how it may be protected by nitisinone.

Then, Dr Andrew Jones from the Royal Liverpool University Hospital, will speak about his work in managing pain for AKU patients. Attendees at the National AKU Centre now benefit from Dr Jones’ work where he has managed to reduce chronic pain.

We finish off the day with a talk from our chairman, Dr Nick Sireau, explaining why research is so important for AKU patients, and looking at how the AKU Society addresses AKU. Nick will then open a group discussion looking at the future of AKU research, helping us to plan a strategy to ensure the very best research for AKU throughout DevelopAKUre and beyond.

If you’re interested in attending the meeting in Sweden, registration is free. To confirm your place, please email Anki Kihlberg (an***********@so**.com) or Oliver Timmis (ol****@ak********.org). We hope to see you there!

If you can’t join us in Stockholm, our next Patient Workshop will take place on 29 November 2014 at Goodison Park, near Liverpool, UK. For more information and to book a place, please contact Lesley Harrison (le****@ak********.org).