Calendar of Events

Sponsored Cycle - London to Cambridge

13-Sep-2015

On Sunday 13th September the AKU Society team will be embarking on a full day of cycling (over 70 miles!) from London to Cambridge. The event will be to raise money for an international patient workshop, to be held in Liverpool in April. Patients from all over the world will have the opportunity to learn about their disease from AKU experts, meet one another, and get an update on research. The cycle will start from The Royal Col.....more

Charity Raffle: Raising Money for our International Patient Workshop

08-Sep-2015

The raffle has now been drawn. Check below to see if you have won! If you have, and have not been contacted, please get in touch with Eve ([email protected]). Congratulations to all winners, and thank you to everyone who took part. Altogether we raised £782, which will go to support patients attending our first ever international patient workshop! Wine Society wine to value of £100 Brian McClure Brittany.....more

Webinar: DevelopAKUre Clinical Trial Progress

21-Jul-2015

On Tuesday 21st July we will be holding an online webinar about the progress of our DevelopAKUre clinical trials to date. This will be your opportunity to ask the experts your questions, and understand how this research will help you. Speakers Professor Ranganath, Medical Director of DevelopAKUre clinical trials Helen Bygott, Research Nurse for DevelopAKUre clinical trials Lesley Harrison, Patient Support Manager, AKU So.....more

Our Fifth Patient Workshop

20-Jun-2015

Our fifth patient workshop will be held on Saturday 20th June in the conference facility at London Zoo! Not only have we got a fantastic venue for you, we have some brilliant activities and speakers throughout the day. Registration will begin at 9.30am, and we will have access to the zoo itself from 10am. After our zoo visit, we will be treated to an active session on chair based exercise! Lunch and refreshments will be prov.....more

Photo Competition Deadline

27-Mar-2015

We are launching an exciting photo competition to run alongside our crowdfunding campaign (http://www.akusociety.org/blog/cure-black-bone-disease-time-is-running-out). We are challenging you to take photos in front of different time keeping devices. The person with the best photo will get themselves a selection of our perks as a prize! As you all know, the title of this campaign is Cure Black Bone Disease: Time Is Running Out (https:.....more

Mental Health Discussion Week

16-Mar-2015

From 16th-20th March we will be holding a discussion week focused around mental health. The main discussion will be held on our online community on PatientsLikeMe (https://www.patientslikeme.com/users/sign_in), where we have a private forum for AKU patients. However, we will be encouraging discussion on all of our platforms! Living with long term health conditions can be very difficult. It can be especially hard for those living with.....more

Improving Access to Specialised Services and Therapies for Welsh Rare Disease Patients

22-Jan-2015

The AKU Society and Genetic Alliance UK are hosting an event at the Welsh Assembly to raise awareness of the benefits to patients with rare diseases of gaining timely access to specialised services and therapies. The event will be held on 22nd January 2015 at The Senedd, in Cardiff Bay, and is sponsored by Lindsay Whittle AM. The Genetic Alliance UK (http://www.geneticalliance.org.uk/) is the national charity working to improve the l.....more

Our Fourth Patient Workshop: 29th November

29-Nov-2014

We had great fun at our last patient workshop at Alexandra Palace in London, and we have another exciting venue lined up for you this time in Liverpool. Save the date now! Our next patient workshop will be held on Saturday 29th November at Goodison Park, the home of Everton Football Club in Liverpool. The event will run from 10am-4pm, and all lunch and refreshments throughout the day will be provided. There may even be a chance to go.....more

Memorial Service for Robert Gregory

24-Nov-2014

We are sad to announce that Robert Gregory, co-founder of the AKU Society, passed away in October. As many of you know, Bob was the co-founder of the AKU Society along with Prof Ranganath. When Robert realised that little was being done for AKU patients, he decided to set up the AKU society as the world’s first charity exclusively dedicated to the disease. The National AKU Centre was named after Robert in recognition of his key role i.....more

Our Eighth International Workshop on AKU

16-Oct-2014

On Thursday 16th October we will be holding our eighth International Workshop on AKU. This year the event will be held in Sweden, at Hotel Ariadne. From 9am until 5pm there will be experts from around the world speaking about the latest research and findings into AKU. Talks will cover topics from gait analysis to an update on AKU research in the USA. Anyone who is interested can attend and registration is free. All you have .....more

Research and Science Extravaganza - Expert Forum

11-Aug-2014

From 11th- 15th August we will be holding a research and science extravaganza event. Have you got burning questions about research in to AKU? Do you want to know more about the genetics of AKU? Have you got a scientific question about the disease? This is your opportunity to ask the top AKU experts and researchers. All week our panel of experts will be available on our PatientsLikeMe (https://www.patientslikeme.com/) forums to answer.....more

Our Third Patient Workshop: 7th June

07-Jun-2014

Your opportunity to meet other patients with AKU and get up to date on what we have been up to at the AKU Society! Our first two patient workshops have gone brilliantly and we can't wait to make the third one better than ever! The workshop will be held on Saturday 7th June at Alexandra Palace in London. It will run from 10am until 4pm, and lunch and refreshments will be provided. Invites have gone out, so check your post and.....more

Our Second Patient Workshop: 17th October

17-Oct-2013

Meet others with AKU, while hearing presentations about pain management, AKU research and an overview of AKU online. Following the success of our very first patient workshop, we're excited to announce that we’re hosting a second one to run alongside the 7th Annual AKU Conference. It will be held on the same day and at the same venue as our 7th Annual AKU Conference, which is traditionally focused on research updates f.....more

Researching AKU: Our 7th International Conference

17-Oct-2013

On Thursday the 17th of October, we will be holding our 7th International Conference on alkaptonuria (AKU). The day will feature updates from leading specialists about the latest developments into AKU research. This year, our research conference will run alongside our second ever patient workshop. Attendees will be able to switch between the two events, giving them a chance to meet AKU patients as well as hear the latest AKU research.....more

British 10K London Run

14-Jul-2013

Run the UK's most prestigious, sought-after 10km road race in support of the AKU Society. Lace up your trainers and take a run through London, viewing its historic landmarks in this fantastic 10k event. The race will be held on July 14th 2013, starting at Hyde Park Corner, continuing past Trafalgar Square and St Pauls, through to Tower Bridge, before returning alongside the River Thames. Help us continue the great .....more

First Patient Workshop

26-Jun-2013

We’re excited to announce that on the 26th of June we will be holding a free patient workshop. Patients and caregivers will have to chance to meet up with each other, learn low protein baking recipes and receive advice on the upcoming disability benefit changes. Our Patient Support Officer, Lesley Harrison, has been speaking to Fate Special Foods, a small family company who produce baking mixes suitable for those on.....more

The Official Opening of the National AKU Centre

18-Jan-2013

On Friday the 18th of January, the Official Opening of the Robert Gregory National Alkaptonuria Centre will be taking place. The National AKU Centre is a free service in Liverpool funded by the Department of Health, open to anyone over the age of 16 who has been diagnosed with AKU and living in either England or Scotland. Patients who attend the NAC receive a full health assessment and treatment of Alkaptonuria (AKU), access to th.....more


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AKU Blog

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

Garrod Day Coffee Morning 2018 - On The Day
28-Nov-2018

Yesterday was the annual Garrod Day Coffee Morning. We celebrated Sir Archibald Garrod&.. ...more

Sir Archibald Garrod and Garrod Day 2018
01-Nov-2018

Garrod Day is quickly approaching. It’s a very important day in the history of alkapto.. ...more

October at the AKU Society
25-Oct-2018

The AKU Society has had a hectic month. In today’s blog, we hear about what each team .. ...more

Stand Up For AKU Comedy Night Spectacular!
10-Oct-2018

Last week we held our third annual Stand Up for AKU Comedy Night in Cambridge, at the snug a.. ...more