To all AKU patients and relatives in England,
We got back around midnight last night from a day with the research team in Liverpool. And what a day. I absolutely love going to meet them all in Liverpool. It’s such a buzz. Dr Ranganath, one of the key drivers behind the whole AKU movement, presented the results of his clinical study and research into 44 AKU patients. Fascinating stuff. There’s some really good data there about spinal conditions, age of onset of symptoms, etc – all of which will inform our clinical trials.
We also spent lots of time discussing how we’re going to develop these trials. Getting Slovakia on board will be crucial, because of the high incidence of AKU there. And the great news is that Dr Andrea Zatkova, the AKU geneticist in Slovakia, emailed me today to say that they are thinking of setting up an AKU centre there. That’s extremely exciting.
And to round it all off, we’ve been selected to present to the Faster Cures conference in New York in December: http://www.partneringforcures.org/. More on that in a later blog.
I’m really optimistic about the future for AKU. The NHS has just announced a call for proposals for its national commissioning, which is the department that commissions services for ultra rare conditions. We are going to put in an application to set up a specialist AKU centre at the Royal Liverpool University Hospital, building on all the expertise that we’ve been supporting over the past few years. It’s a very long process, which can take more than a year to get approved, but it’s promising.