It’s another busy few months here at the AKU Society. We are travelling all over Europe to represent AKU patients and learn new skills at various events from Gothenburg to Barcelona. This week’s blog looks at where we will be and why.

Cambridge Rare Diseases Network (CRDN) RARE summit – 23rd September

The brilliant CRDN are holding their annual Rare Summit at the Wellcome Genome Campus here in Cambridge. The RARE Summit aims to highlight “patients as partners – empowering patients, influencing change”. CRDN will bring together clinicians and patient group leaders to share and learn from each other’s experiences in the world of the rare disease and to highlight how we can all give patients the tools to help them fight their conditions. The day is comprised of talks and workshops along with incredibly valuable opportunities to network and rub shoulders with the movers and shakers in rare diseases in the UK. We will be displaying a patient journey poster and AKU Society CEO, Nick, will be moderating one of the many sessions. To buy tickets, please click here. If you are attending, please let us know.

Gothenburg EURORDIS Digital School – 8th – 9th October

Our Communications Manager Ciarán Scott will be travelling to Gothenburg in Sweden to take part in the first digital school held by EURORDIS (The European Organisation for Rare Diseases). The two-day residential school will be held at the beautiful Agrenska Resources Centre on the picturesque Swedish coast. It is designed to give those working for a patient group or representing their condition the ability to improve their online communications skills along with introducing them to innovative new tools. The talks will be given by staff from EURORDIS and 3 Monkeys Zeno, a global communications agency. The school will hopefully improve the quality of the AKU Society’s social and online communications, so watch this space!

RCGP Conference & exhibition – 24th – 26th October

The AKU Society will have a stand at this year’s Royal College of General Practitioners (RCGP) Conference and Exhibition, which will be held in Liverpool, home of the National Alkaptonuria Centre (NAC). Exhibitions like these are a handy way of reaching out to GP’s and other health care professionals about AKU and the work we do. Lesley Harrison, our Patient Support Manager, will be joined by AKU Patient and AKU Society trustee Tony Esmond who will teach GP’s all about the disease and how to help patients in their care. This is our second time at the event, and it promises to be a brilliant opportunity to talk to health care professionals and other charities.


Stockholm. DevelopAKUre Final Report meeting – 6th November

The AKU Society will travel to Stockholm, home of Swedish Orphan Biovitrum (Sobi) the makers of nitisinone. The meeting will serve as the final meeting of the DevelopAKUre consortium and will be an opportunity for all the partners involved in the trial to understand the results of SONIA 2 and to be kept up to date about the next steps in the process for a potential marketing authorisation for nitisinone at the European Medicines Agency (EMA).

Barcelona World Orphan Drug Congress Europe 2019 – 12th – 14th November

The whole AKU Society team will again travel to Barcelona to take part in the fantastic WODC. The event is a substantial 3-day series of talks and exhibitions attracting a vast swath of professionals involved in the world of rare diseases. These range from patient groups and pharmaceutical companies to government payers and health service employees. The congress is a way of making sure that we are up to date with the current state of rare diseases treatments, access to drugs and government initiatives from across Europe. The WODC is mainly concerned with promoting the way new treatments are made available to patients who suffer from rare diseases. This can be through highlighting new clinical trials or how governments can buy new and effective drugs. This is essential for the AKU Society as we look beyond the DevelopAKUre clinical trials into the future of nitisinone use in Europe.
Last year’s conference was incredibly useful, and we managed to connect with people who helped us access nitisinone in countries who previously could not get the drug. This year already promises to be as useful.’

AKU Society Patient workshop – 25th November

At the end of November, we will also host our annual patient workshop at the Bluecoat centre in Liverpool. This workshop will be centred around diet and exercise, an area that many AKU patients have been asking for more information. Our patient workshops are popular ways that AKU patients in the UK can learn how to manage their condition and make new friends and connections with fellow AKU patients. During the event, we will also launch our brand-new Royal College of Nursing Institute (RCNi) interactive module. This is designed to assist nurses in understanding AKU and teaching them how to diagnoses and care for AKU patients. The module will be available online. The day will also fall on Garrod day, the birthday of Sir Archibald Garrod, the doctor who first described AKU so expect lots of cakes and a raffle! More information about this year’s patient workshop and raffle will follow shortly.