Calendar of Events

London Marathon 2017


The London Marathon is one of the most prestigious running events in the world. This year we are lucky enough to have our very own AKU runner compete in the event. Having reviewed several potential candidates we have decided our runner will be Joe England! We believe Joe is the perfect choice for the London Marathon, and look forward to working with him to help him m.....more

Our Sixth Patient Workshop


The AKU Society is holding its 6th Patient Workshop! Patient workshops are a free, brilliant way for AKU patients and family members to come together and learn more about AKU. Throughout the day there will be a range of fantastic activities and speakers. Including a talk from Dr Adam Taylor on the current state of AKU research. You will also have the chance to meet other patients, as well as medical professionals and researcher.....more

Fire walk for AKU!


The AKU Society has 20 places available for the Findacure ( Cambridge Firewalk! Fire walking is an exhilarating activity that has become extremely popular in recent years. Taking part will give you a chance to participate in this adrenaline rush, whilst helping out a local charity. The walk itself will be guided by expert qualified trainers. You can find out more information about the company who .....more

Cambridge Half Marathon 2017


The AKU Society has 10 places for the Cambridge half marathon in March 2017! The event has become so popular since it began 6 years ago that places sell out soon after they go on sale. So this is your chance to get a ticket for this sold-out event! Rory took the first place and is now waiting for others to join him…. In 2016 we had 8 runners take part in this great event and everyone had a great time whilst raising crucia.....more

Garrod Day Coffee Morning 2016


Following the success of last year, we will be hosting another Coffee Morning on Friday 25th November to celebrate Garrod Day. Garrod Day is a national AKU awareness day, coined by the AKU Society to celebrate Sir Archibald Garrod's birthday, who discovered AKU, the world's first genetic disease back in 1902. To mark the occasion, we will be hosting a Coffee Morning in our offices, with lots of cakes, hot drinks and our very own charity.....more

Stand up for AKU Charity Comedy Night


Join us at Cambridge's Portland Arms for a fantastic evening of live comedy, hosted by the fabulous Pam Ford. Acts include: Brian Higgins - One of the most experienced headline acts on the comedy circuit, his impeccably delivered cheeky upbeat sets, never fail to deliver the goods! John Mann - Sharp observation and wry wit mingled effortlessly with a gentle and confident rapport ensure this comic is unfailin.....more

International Patient Workshop


Our first International Patient Workshop took place in Liverpool on Wednesday 20th April. It was a fantastic workshop, bringing together the biggest collection of AKU patients, with patients attending from 13 different countries! Read our blog to find out more about the big day. Meet Carolyn, an AKU patient from Canada, who is looking forward to attending our first International Patient Workshop in April! T.....more

Cambridge Half Marathon


Cambridge Half Marathon places have now all been taken! Thank you very much to all of our amazing runners who have signed up to take part! You can meet our runners here ( and found out about the big day here. ( 28th February 2016 will see the 5th running of the half .....more

Online Expert Forum - Challenging Misconceptions


Do you have any worries about your disease? Are you struggling to find accurate, reliable information? Do you have concerns about your diet, pain management or access to treatment? Then join our expert forum week and get your questions answered! Our Expert forum will take place on PatientsLikeMe on 15-19 February. The theme is challenging misconceptions surrounding AKU. We are regularly contacted by AKU patients, who have very little.....more

Garrod Day Coffee Morning


We hosted our first AKU Coffee Morning in our Cambridge office on 25th November to celebrate Garrod Day. The day was a great success - we raised lots of money and awareness for AKU and ate lots of cake! Check out our Coffee Morning blog ( to find out more about the big event. We also organised and ran a charity raffle at our Coffee Morning - lots of fantastic p.....more

Our Ninth International Workshop on AKU


The Ninth International Workshop on AKU will be held in Hotel Phoenix in Copenhagen, Denmark, on Thursday 15th October 2015. The day will run from 9am until 5.30pm, with many exciting speakers contributing to the conversation about AKU research. There is an optional evening dinner from 7.30pm onwards at the Hotel Phoenix. Speakers will include: Dr Anne-Christine Bay-Jensen, Nordic Bioscience, Denmark - Biomarkers in A.....more

Online Medical Expert Forum


Do you have any worries about your disease? Do you, or a family member, have a medical mystery you think is related to AKU? Are you unsure how to best manage your disease, or control your pain? Join our online expert forum to speak to the top medical experts on AKU, and get your questions answered. Our medical expert forum will be held on our PatientsLikeMe community from 21st - 25th September 2015. To join you simply need to have se.....more

Sponsored Cycle - London to Cambridge


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


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 ( 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


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


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


We are launching an exciting photo competition to run alongside our crowdfunding campaign ( 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


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 (, 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


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 ( is the national charity working to improve the l.....more

Our Fourth Patient Workshop: 29th November


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

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AKU Blog

UK Genetic Disorders Leadership Symposium

On Friday 10th and Saturday 11th March Lesley attended the 3rd UK G.. ...more

AKU Society's Sixth Patient Workshop

Our Sixth Patient Workshop took place on Saturday. Held at Alexandra Palace it was a great venue tha.. ...more

London Marathon 2017 - Meet the Runner

The London Marathon is one of the most prestigious running events in the world. This year we are.. ...more

Rare Disease Day 2017

Every year people from all over the word come together to celebrate Rare Disease Day. A day designed.. ...more

Cambridge Half Marathon 2017

The AKU Society had seven places in this year’s Cambridge Half Marathon. With each of.. ...more