AKU Society Blog

We are excited to announce the launch of our global AKU patient registry. Our registry will play a crucial role in increasing our understanding of AKU and driving research into potential treatments and cures.

Our latest blog is written by Liesbeth Desmet, a PhD student at the Vrije Universiteit Brussel (VUB). She recently participated in our early-stage researcher bursary programme to visit the University of Liverpool and expand her knowledge of AKU research.

Nitisinone is a vital treatment for AKU, but it is not yet approved or commercially available in many countries, which limits access for AKU patients around the world.

On the 27-28th July we hosted our 13th International Scientific Conference on AKU in Bratislava, Slovakia, which had a focus on treating hypertyrosinaemia in AKU and HT-1.

We are looking forward to welcoming the AKU scientific community to Bratislava, Slovakia, next month for our 13th international scientific conference on AKU. On the 27-28th of July we will unite AKU researchers, academics, and clinicians from around the world at the Faculty of Medicine, Comenius University, Bratislava. Our conference will allow us to update the wider AKU […]

We are pleased to announce that we are hosting our 13th international conference on AKU, which will be held from the 27-28th of July. It will be held at the Faculty of Medicine, Comenius University, in Bratislava, Slovakia. The focus of the conference will be on treating hypertyrosinaemia in AKU and hereditary tyrosinaemia type-1 (HT-1). Our conference will bring […]

This week’s blog is written by our trustee and AKU patient, Tony Esmond, who recently took part in Sanofi‘s This is Rare Campaign. To mark Rare Disease Day, Sanofi launched their This is Rare Campaign which united rare disease patients, patient group representatives, and healthcare professionals at the iconic Abby Road Studios to share their experience through […]

Today is Garrod day, an important event in the history of AKU. The 25th of November marks the birthday of Sir Archibald Garrod who first identified that AKU was inherited in 1901. The day is now used to raise awareness of AKU. Our co-founder and trustee Prof Ranganath has written a blog explaining Garrod’s research […]

Today’s blog is written by Harriet Willett, who has just begun her PhD researching AKU at the University of Liverpool: Hi everyone! I’m Harriet. I am a graduate from Lancaster University with a Master’s in NaturalSciences specialising in chemistry and statistics. I loved my 4 years at Lancaster and through mydegree became interested in the application of both […]

The AKU Society provides a free and confidential counselling service for all those impacted by AKU, whether you or a family member are newly diagnosed, or have been living with it for some time. This service is provided by David and Rebecca from RaremindsCIC. Rareminds is a non-profit organisation that specialises in mental health support for […]

We would like to give a warm welcome to our newest trustee, Jess Barnes. She joins us as the first female on the board and we are delighted to have her on the team. Jess is a mum to a young son that has AKU and has supported the charity since his diagnosis in 2013. She […]

This week’s blog looks back at our 12th International Conference on AKU. After two years of COVID, we were finally able to reunite the AKU scientific community. We heard presentations from 23 speakers, coming from eight different countries, who discussed current and future research into AKU. The conference was hosted at Vrije Universiteit Brussel, Belgium, on […]

In June this year, we are celebrating the 10th anniversary of the National Alkaptonuria Centre (NAC), which has played a pivotal role in supporting and caring for the AKU community. In 2012, the AKU Society collaborated with the Department of Health to establish the NAC at the Royal Liverpool University Hospital. UK AKU patients attend the […]

We are looking forward to welcoming the AKU Scientific community to Brussels next month for our 12th International Scientific Conference on AKU. This meeting will bring together AKU researchers, academics, and clinicians to update the wider AKU community on AKU research. Talks and presentations will include an update of current and previous research, as well […]

We are delighted to announce the return of our cancelled AKU Scientific Conference. The conference was planned for last year but was delayed due to the uncertainty of country-to-country restrictions as part of the COVID-19 pandemic. The meeting will again be held in Brussels, Belgium, at the Vrije Universiteit Brussel (VUB) on Saturday 14th and Sunday 15th […]

n this week’s blog, we meet Michael Warne, our new Fundraising Officer. A native of Cambridge, Michael joins the team to fill Juliet’s sizeable shoes, who is leaving the AKU Society to travel the world. Juliet will be sorely missed, but we look forward to working with Michael. To read Juliet’s final blog and find […]

In this week’s blog, we say goodbye to our Head of Fundraising, Juliet Rowe, who started her role in September 2018 – what a whirlwind it’s been! What are you most proud of achieving during your time here? Our BBC Radio 4 Appeal was an exciting and moving experience to be a part of. One […]

Today’s blog is written by one of our hardworking volunteers for our exciting upcoming crowdfunding campaign to raise money for the first Global Black Bone Disease registry My name is Denise Higgins and I am an AKU patient and president of The AKU Society of North America (AKU-NA). This crowdfunding effort is vital to further […]

This week’s blog is written by Lyndsay Close and tells her husband Mikes recent AKU journey. Mike will be attending the National AKU Centre (NAC) in September for the first time. Together Mike and Lindsay run a successful racing team called Close racing. When they heard about the AKU Society, they were kind enough to put […]

We are honoured and humbled to announce that we have now calculated the final amount raised through our recent BBC Radio 4 charity appeal: including Giftaid, we have raised a staggering £28,188.10. We want to say a huge thank you to every single person who donated to support this campaign and to those who helped […]

Today’s blog is written by Hannah Harrison, the Head of Patient Support & Welfare at the AKU Society. The past fifteen months have been tough for everyone, and the AKU community is no exception. When we held our clinics at the NAC in March 2020, we had no idea how all our lives would change […]

Today’s blog comes from a letter we received as part of our BBC Radio 4 appeal. Along with a very generous donation, Evelyn Cauwood wrote a remarkably interesting account of her father Fred and his experiences with the disease before we had established the National Alkaptonuria Centre (NAC) and Alkaptonuria (AKU) was more widely understood. […]

This week’s blog is written by Jess Barnes, Mum to a son called Daniel with AKU. Jess will be presenting our BBC appeal on Sunday 2nd of May. To hear more about the appeal, and how and when to donate please head here. You can also listen to an audio clip of Jess describing why she […]

We are delighted to announce that we have been selected by BBC Radio 4 to produce a charity appeal. The appeals are ways in which charities can broadcast their message and calls for support to a large national audience. What is a BBC Radio 4 charity appeal? Since the 1930s BBC Radio 4 has been […]

In today’s blog, we look at our recent mini online patient workshop held this February. The workshop was designed to fill the gap left by face-to-face meetings that have not been able to go ahead due to COVID-19 and lockdowns in the UK. Held on Thursday 11th February, the workshop was attended by 21 UK […]

Todays blog is written by Kym Winter, CEO of rareminds and psychotherapist. We’ve all got used to the saying during lockdown that ‘we are all in the same storm, but not all in the same boat.’ Some of you will be craving space in a house that feels too crowded, some of you will be craving company […]

We are delighted to announce that we will be hosting a mini online patient workshop for UK patients on February 11th. The Covid-19 pandemic has forced us to cancel our popular face to face patient workshops usually held in Liverpool every year. Due to this, we are holding them virtually. The online workshop will be […]

This week’s blog is written by Professor Joery De Kock and explains his exciting research into a cure for AKU. At the end of this blog, we have included a short paragraph that explains the research in a short and accessible way. It was early 2015 when I became familiar for the first time with […]

The AKU Society team and trustees hope you had a very Merry Christmas and wish you a safe and Happy New Year. In this week’s blog we look at our recent Christmas appeal and found out how it went. Our recent Christmas appeal was dedicated to raising money for our newly launched online counselling service. […]

The AKU Society As you are all aware, Covid-19 has changed the way a lot of services and organisations work. To ensure the safety of all staff, their loved ones and vulnerable people in the community, the trustees have decided that the AKU Society should continue to work remotely from home. We will not be […]

It’s now more than a week since our Christmas appeal launched. Thank you to the people who have donated already. Your donations will help us fund our vital counselling service available for free for all AKU patients in the UK. One of the ways we have reached our supporters in the UK and beyond is […]

Last Wednesday was our annual Garrod Day Coffee Morning. Each year on 25th November we celebrate the birthday of Sir Archibald Garrod, who first identified AKU in 1902. However, this year was a little different. We usually host face-to-face coffee mornings across the globe, but we went virtual this year. Due to current COVID-19 restrictions […]

The AKU Society’s new Telephone and Online Counselling Service is now up and running! This is a free, confidential service for all UK AKU patients and family members. This service is part of our Body to Mind Project which received Funding from the Coronavirus Community Support Fund, distributed by The NationalLottery Community Fund, Thanks also […]

In today’s blog is another opportunity to hear directly from the CEO and Chair of the AKU Society, Nick Sireau about a successful but challenging year. 2020 has been a big year for AKU. On the one hand, we’ve had huge successes, particularly the positive opinion from the European Medicines Agency (EMA) last month for the […]

Our annual Garrod Day Coffee Morning is approaching again! However, this year we are taking a slightly different approach with Garrod Day as we are going virtual! Yes, on 25th November we are hosting a virtual Garrod Day Coffee Morning. What is Garrod Day? Garrod Day is an important day in the history of Alkaptonuria […]

Good news! The AKU Society has been awarded a £45,000 grant from the National Lottery Coronavirus Community Support Fund. This emergency COVID-19 fund will support us for the next six months to support patients mental health. We have completed two successful Big Lottery funded projects in the past; one between 2007-2010 called the “AKU Information Centre”, which focused […]

The AKU Society is proud to announce that the European Medicines Agency (EMA), which regulates medications across Europe, has given a positive opinion on the extension of the use of nitisinone to treat AKU. This means the EMA feels that nitisinone can be used to treat AKU and that it should be used for both AKU and […]

This weeks blog is written by our placement student, Marina, from Royal Holloway University London. Hello, I’m Marina and I am going into my third year in Biomedical Sciences at Royal Holloway University of London. I am originally from Barcelona, Spain, and I have been living in England for the past two years. I look forward to a […]

We are trying to diagnose new patients in the UK by asking people with black spots on the white of their eyes to send us photos of the black spots to see if they need a test for AKU. As a lot of you are aware, the pain from AKU gets worse when patients are […]

Today’s blog is a little different. Below is a video from the CEO and Chair of the AKU Society Nick Sireau, talking about how you can help us form lasting corporate partnerships that can help us raise money to continue our groundbreaking research and patient support. If you think you can help, or need some more […]

Todays blog is written by Dr Andrew Davidson who has recently completed his PhD in AKU and nitisinone. I became a state registered Clinical Scientist in Clinical Biochemistry back in 2008 and following this, like all professionals in the speciality I studied for my fellowship examinations for the Royal College of Pathologists. After obtaining this in […]

We are excited to announce we are hosting our first virtual ‘Coffee & Chat’ event! What is a ‘Coffee & Chat’? This is where you take a break from your day and join in on our video chat to chat and catch up with the AKU community. Feel free to invite family and friends too. While many […]

Last week the AKU Society team attended the 10th European Conference on Rare Diseases 2020 (ECRD 2020), hosted by Eurordis – a charity that represents rare disease patients across Europe. Every two years the ECRD is held in a European country and attracts people from all over Europe and beyond to come together to network and listen to interesting […]

The COVID-19 crisis is a worrying and stressful time for everyone across the country. We are told time again to wash our hands regularly, maintain social distancing by keeping two meters apart and not to meet with other people and only leave the house for essentials. However, what about the impact on people’s mental health? As we […]

The COVID-19 pandemic is affecting everyone’s way of life. At the AKU Society, we are all working from home and looking at ways we can continue to support patients during this pandemic. Community fundraising events and sponsorships need to be put on hold for now. However, there are still many (virtual) ways you can fundraise for the AKU […]

—————–Update: 8th October 2020 —————- Since our last update, the picture across the country is changing rapidly. Each home nation now has its version of advice and regulations that need to be reviewed before making any decisions on when and if you mix with others or go to work etc. To find out how you are affected […]

On Sunday 8th March, our Fundraising Officer Juliet and CEO Nick were at Midsummers Common in the centre of Cambridge to cheer on our half marathon runners Juliette and Rob. They braved the 13-mile Saucony Cambridge Half Marathon around Cambridge. In today’s blog, we hear from Juliet about what happened on the day. It was a sunny day on […]

It seems like yesterday when I met Robert Gregory. He came to the hospital with his niece who was referred to exclude alkaptonuria (AKU) – before I knew it Robert had registered an AKU Society with the Charity Commission, with me as Medical Director/Co-Founder – my AKU journey had begun in 2003. At the time I […]

In this week’s blog, we would like to introduce our 2020 Cambridge Half Marathon Runners! The Half Marathon will be on the 8th March starting on Midsummer Common before winding its way through the historic Cambridge centre. We have three runners braving the 13-mile race. Firstly, meet Dave, Co-founder of Healx. Why are you running the Cambridge Half […]

In this week’s blog, we look at the much-anticipated relaunch of the AKU Society website. Our new site has been designed to be much more user-friendly, accessible and easier to navigate while allowing the most important content to be front and centre. Earlier last year we were informed that the software we use to host […]

Today’s blog is written by a long-time friend of the AKU Society Jess Barnes. Jess’ son was diagnosed with AKU six years ago. When I found out that the AKU Society needed support in funding the first-ever paediatric study into alkaptonuria, I knew I needed to help. So, on Christmas Day I took the plunge and started […]

We are delighted to announce that all the data from the SONIA 2 clinical trial has now been analysed and very positive trends have been highlighted. Due to this, SOBI (Swedish Orphan Biovitrum)  announced that they are going to apply to the European Medicines Agency (EMA) for market authorisation for the drug to be used […]

Today’s blog is written by the head of the Brazilian AKU Society, Flavia Mayrink. Originally written in Portuguese, the blog details her recent visit to the National Institutes of Health (NIH) which is based in Bethesda, Maryland, USA.In September 2018, I got in touch with Dr Wendy Introne to find out about the clinical research study at the NIH. I […]

Five years ago, we partnered with the Royal College of GPs (RCGP) to develop an online eLearning module all about AKU. The aim of this module is to increase awareness of AKU among health professionals, especially GPs, and ultimately to improve diagnosis. This was set up so that anyone could access the module to learn more […]

Eurordis Digital School At the start of the month Ciarán our Communications Manager travelled to chilly Gothenburg in Sweden to take part in the inaugural Eurordis Digital School. The workshop was held at the Agrenska Resource Centre for Rare Diseases, a facility designed to provide support and programmes for children and families affected by rare diseases. The two-day training session […]

We are only one month away from Garrod Day! On the 25th November, we celebrate the birthday of Sir Archibald Garrod, the AKU pioneer who first understood the inherited nature of the disease way back in 1902. Garrod day is marked by hosting coffee mornings all over the world and year we get very excited to see […]

We are busy preparing for our annual Garrod Day Coffee Morning on the 25th of November. This year’s Garrod Day will be an international event, with coffee morning’s being held all over the world. In this week’s blog, you can learn some fantastic top tips on how to hold a successful coffee morning wherever you are in […]

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. SeptemberCambridge Rare Diseases Network (CRDN) RARE summit – 23rd September The brilliant CRDN are holding their annual […]

It’s that time of year again; our annual Garrod Day Coffee Morning is on the 25th of November. Sir Archibald Garrod was an doctor who first described AKU as an inborn error of metabolism and noticed it was inherited in 1902. He had a childhood interest with colour variations, and he took particular notice of how the […]

We are very sad to announce that Ann Kerrigan passed away last week due to complications during heart surgery. Ann has been involved with the AKU Society for as long as we can remember and was one of the first people to attend the National Alkaptonuria Centre (NAC) in 2012. Ann was always keen to talk […]

Hi! My name is Maria and I am currently a 2nd-year student at Royal Holloway University of London, where I study Psychology. I come from Madrid in Spain, but I have been living in England for the last two years of my life. During these two years, I have worked as a student ambassador in my university, volunteered with a […]

Today’s blog is written by Nick Sireau the Chair and CEO of the AKU Society, It was in 2003 that I sat down with Robert Gregory, Prof Alan Shenkin and Prof Ranganath in an office at the Royal Liverpool University Hospital and discussed where we wanted to go with the newly formed AKU Society. Robert had been living […]

My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK healthcare. The study is sociological which means it will focus on the way AKU and relevant treatments are understood and approached. It is not a medical research study which could affect your clinical care. The study is part of my research […]

In this week’s blog, we explain how you can donate to the AKU Society through mobile giving, online shopping, payroll giving and Facebook Donation. There are many different ways to give to us, each designed to make the experience as easy as possible. Text Giving We have recently revamped our text giving platform. To donate, text AKUSOCIETY […]

Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Water Comedy Club in the centre of Liverpool. Overall, we raised £694, through online sales, on-the-door sales and raffle ticket sales. The raffle was a huge success; we sold 139 tickets on the night. This week’s blog is written by Juliet, our Fundraising […]

The Royal College of Nursing (RCN) Congress is the biggest event of the nursing calendar and attracts more than 4,000 nurses from across the UK and beyond. It provides a platform for nurses to share and develop nursing practice and influence health policy debates. This year Congress was held at the ACC in Liverpool from 19th to 22nd […]

Rare disease research has grown significantly over the past decade, yet conferences devoted entirely to this remain scarce. That’s why the REACT Congress, set up by Dr Olivier Menzel and his BlackSwan Foundation, is so important. At its first gathering, in Switzerland in 2012, I had the honour of giving a presentation about AKU. Afterwards, I was approached by […]

Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people on Facebook every month, Facebook can be a brilliant place for you to engage with your friends and family and ask them to donate to your AKU fundraiser. In today’s blog, we will be giving you some inside tips on how to make a […]

Our annual ‘Stand Up to AKU’ night is rapidly approaching and here at the AKU Society, we are all very excited. On Sunday 9th June, we have four fantastic comedy acts performing at the Hot Water Comedy Club in the centre of Liverpool. The fabulous Pam Ford is hosting the night; she is sure to shock the audience with […]

Today’s blog is written by AKU patient Simon Laxon. In it, he writes about his experience with the disease and how the National Alkaptonuria Centre (NAC) has helped him.Having a rare genetic disorder can be a pretty daunting thing. It can leave a person prone to feeling frustrated and isolated. I know this from personal experience, after spending […]

We are excited to announce that our Stand up to AKU Comedy Night is back! This year we are heading back to Liverpool’s legendary Hot Water Comedy Club, where we hosted 2017’s barnstorming night. Pam Ford is back at the wheel and is sure to keep the audience in line with a firm hand… especially the young men […]

On Tuesday the 26th of March, our Patient Support Manager, Hannah, and Fundraising Officer, Juliet, travelled to Luton for the Flying Start and Breaking Down Barriers Health Awareness and Genetics Event. Flying Start and Public Health Luton worked in partnership with the national project ‘Breaking Down Barriers’ to host the event. Flying Start aims to improve outcomes for children […]

This week we meet Eve Whitley, our new Admin Assistant. Eve started just this week, and will be helping Hannah and the rest of the team to support all of our patients. This is your chance to get to know her a bit better. What were you doing before you joined the AKU Society? I was studying […]

Last week, Rare Disease UK launched a report of its recent patient survey, looking at exploring what it is like to live with a rare disease. This week’s blog discusses the many findings that were published in the report. Their report: “The Rare Reality – an insight into the patient and family experience of rare disease” is available […]

Last week the AKU team attended a workshop run by Findacure called ‘Navigating the Highly Specialised Technology Programme’ to improve access to rare disease treatments. This week’s blog talks about the many important messages that were taken from the day. The AKU Society is very aware of the challenges rare disease patients’ face with accessing appropriate […]

As many of you will know, we are running the DevelopAKUre clinical trials. These should give us evidence whether nitisinone is effective as a treatment for AKU.  This weeks blog explains the third part of our clinical trial, SOFIA. DevelopAKUre is made up of three parts: What is SOFIA?SOFIA stands for “Subclinical Ochronotic Features in Alkaptonuria”. Ochronosis is […]

Last week I attended the FSI skills conference that gave various training sessions specifically designed for small charities. This week’s blog talks about the tips and lessons taken from the day. FSI is a charity that provide a range of skills and training workshops aimed at supporting small charities achieve their vision. Last week they ran a skills […]

Rare Disease Day is an international day designed to raise awareness to the public and those in government about rare conditions and how they affect people across the world. The day falls on the last day of February every year and sees thousands of events happening internationally. The AKU Society team travelled across the UK to represent […]

Last Sunday our two runners, Ana and Katja, both completed the Cambridge Half Marathon. They raised a remarkable combined total of £651.82. Our fundraising officer, Juliet, was there on the day and told us more about how the day went. Unfortunately, it was a cold and wet day for our runners; however, it was not too windy […]

The Cambridge Half Marathon is Next Sunday. On the 3rd March our two runners will tackle the roads of Cambridge for the for AKU Society. In this week’s blog, we will introduce you to two of them. Our runners have been training hard, and they are all raising vital funds for the AKU Society, so please donate to […]

The AKU Society has just come back from a hectic week in the beautiful Italian city of Siena. We were not, however, there to view the incredible renaissance architecture or sample the lovely Tuscan wine, although we did try. Instead, we attended the final project board meeting of DevelopAKUre and the 11th international scientific workshop on AKU.DevelopAKure […]

On the 18th January, the last SONIA 2 (Suitability of Nitisinone In Alkaptonuria 2) patients were seen at the Royal Liverpool and Broadgreen University Hospital. This means that the patient element of the SONIA 2 clinical trial is now officially over.Patients from all over Europe came to Liverpool, as English and Scottish patients were excluded from […]

Now we are all settled in after Christmas and the New Year, here at the AKU Society we would like to take the opportunity to look at all our plans for 2019. From trips aboard to new research, it seems like 2019 will be as busy as ever.At the end of the month, the AKU Society […]

A Happy New Year from Everyone at the AKU Society. Now that 2018 is well and truly behind us, we would like to take the opportunity to look back at another successful year for the AKU Society. Our 2nd International Patient Workshop In April we hosted our second international patient workshop in Liverpool. As with our previous […]

We are happy to announce that two of our three SONIA 2 trial sites have now finished seeing patients. Both Hôpital Necker – Enfants Malades in Paris and The National Institute of Rheumatic Disease, Piešťany, Slovakia, have now completed seeing AKU patients from all over the globe. They are now beginning the process of analysing all the data to […]

Yesterday was the annual Garrod Day Coffee Morning. We celebrated Sir Archibald Garrod’s birthday. Garrod Day is a day coined by the AKU Society; this is our fourth year celebrating Sir Archibald’s birthday. We celebrated it on the 26th of November this year as his birthday is the 25th and, wanted to celebrate it on a working day […]

Garrod Day is quickly approaching. It’s a very important day in the history of alkaptonuria (AKU). In this week’s blog we celebrate all of Sir Archibald Garrod’s fantastic achievements and discuss how you can make an impact by hosting your own coffee morning for Garrod Day. Who is Sir Archibald Garrod?Sir Archibald Garrod was an English physician […]

The AKU Society has had a hectic month. In today’s blog, we hear about what each team member has been up to.Our Fundraising Officer, Juliet, and Patient Support Manager, Hannah, were both in Glasgow for the  Findacure Showcase on the 10th October. It was at the University of Strathclyde, an excellent venue for the attendees to celebrate rare […]

Last week we held our third annual Stand Up for AKU Comedy Night in Cambridge, at the snug and cheerful Portland Arms. This week’s blog is about the evening and how we raised awareness for AKU. The night was a massive success, and we raised £469.19 in total! The hilarious Pam Ford hosted the night. Some of you may remember Pam […]

Reece, our Admin and Communications Officer, is leaving our team at the end of this week. He is going back to the University of Cambridge to study for Master’s in Classics, with a particular focus on the politics of ancient Rome. This week, Reece talks about the highlights of his time at the AKU Society. As soon […]

Preparations are underway for Stand up for AKU! – our charity comedy night, coming up on 3rd October at 7.30pm. It’s in Cambridge’s Portland Arms, a great venue for live comedy. Five professional comedians (Pam Ford, Rob Coleman, Jason Stampe, Jenny B Side and Don Biswas) are performing. Read more about them here on the AKU blog. Keen? Tickets are […]

10th-16th September is Remember a Charity Week. Legacy giving – the gifts which people leave in their wills – are an important source of funding for UK charities. It makes up 6% of the charity sector’s total income. Charities of all sizes rely on legacies in carrying out their work. Only 7% of the population currently leave gifts to charities […]

In this week’s blog, we meet Juliet, our new Fundraising Officer. Juliet will be involved in apply for funds from trusts and foundations along with organising exciting community events. All to support the vital work the charity does to help patients with AKU. What were you doing before you joined the AKU Society? I was studying History […]

In 2012, AKU Society CEO Nick Sireau and others founded a charity called Findacure. Findacure helps rare disease patient groups get off the ground. The hope is that all can enjoy the same success as the AKU Society. We covered them on our blog on 11th April – check it out here. Findacure hold several Rare Disease Showcases each year in different UK cities. These […]

The newly published results of a study held at the National Alkaptonuria Centre (NAC) show that a drug called nitisinone improves the health of AKU patients. They also show that it reverses a process called ochronosis, where a black pigment is deposited in tissue as a result of the build-up of a toxic acid. We reported this in the AKU […]

We’re really excited about our third Stand Up for AKU Comedy Night on 3rd October. This year, we return to the Portland Arms, Cambridge, for a night of top-class entertainment. The event starts at 7.30pm. Tickets are £11 or £15 on the door. There will also be a raffle with a number of exciting prizes donated by local businesses. Don’t miss […]

New research has proven for the first time that a drug called nitisinone treats AKU in people. For three years, the Liverpool-based National Alkaptonuria Centre (NAC), which gives nitisinone to English and Scottish AKU patients, was running an observational study to see if the drug works. The results have just been published in a scientific journal called Molecular Genetics and […]

We have some exciting news. The AKU Society has just been awarded a £60,000 grant from the Childwick Trust. This will fund a research study into children with AKU, called SOFIA-Paediatric (‘Subchondral Ochronotic Features in Alkaptonuria in the paediatric age group’). As many of you already know, there is a drug called nitisinone. We believe it treats AKU. It is […]

We are looking for a Fundraising Officer. The vacancy is up online and we encourage people to apply. The successful candidate will be the third Fundraising Officer in our history. Our first was Lydia Powell. Lydia joined the AKU Society after taking a master’s degree in International Development from the University of Cambridge. She did a great job. Through community fundraising events, […]

ALCAP (Association pour la Lutte Contre L’Alcaptonurie) is our French sister society. Founded in 2006 by Serge Sireau, it represents over 70 AKU patients in France. Serge is pictured here with his son, AKU Society CEO Nick Sireau, at April’s International Patient Workshop in Liverpool. ALCAP is now a key member of the DevelopAKUre consortium, which we set up to run international clinical […]

Have you noticed the adverts which appear at the top of Google search result pages? They are created on a platform called Google AdWords. Companies pay millions each year so that their adverts are the first things people see when they use Google. Google for Nonprofits is a cornerstone of Google’s corporate social responsibility strategy. It allows charities to […]

The Edinburgh Marathon Festival is the second biggest running event in the UK after the London Marathon. Over its 16-year history, it has had a £30 million economic impact on the city of Edinburgh. It has also raised £75 million for hundreds of charities. This year, 30,000 runners came to the city as part of a great summer of […]

The AKU Society has signed up to AmazonSmile. AmazonSmile is an affiliate marketing service for the online shopping service Amazon. Affiliate marketing is when a company gives some money to a third party for driving web traffic towards its website. In the case of AmazonSmile, the money goes to a charity of the customer’s choice. Through AmazonSmile, Amazon […]

The Royal College of Nursing (RCN) Congress is the biggest and most important event of the annual nursing calendar. More than 4,000 nurses meet there to learn, share and develop nursing practice and influence health policy debates. This year’s congress, in Northern Ireland for the first time, was held at the Belfast Waterfront on 13th-16th May. Hannah, our Patient […]

A rare disease is defined by the European Union (EU) as affecting fewer than one in 2,000 people. Considered together, though, rare diseases are common. Between six and eight per cent of the EU population has one of the 7,000 known rare diseases – that’s around 30 million Europeans. No one country can fight rare diseases alone. That’s […]

You might have noticed that there have been some recent changes to the board of trustees. Here is an overview of what’s happened. Firstly, we’d like to say goodbye to Colleen Addicott, who is stepping down after 10 years. Colleen has been a great help to us, using her experience in occupational psychology to make the AKU […]

Osteoarthritis is a very common joint disease. When cartilage and underlying bone in the joints break down, sufferers can feel pain, stiffness, numbness and swellings. Fingers and thumbs are most often affected, as well as the neck, lower back, knees and hips. Worldwide, 237 million people have osteoarthritis – 3.3% of the global population. Most osteoarthritis is ‘primary […]

April 23rd, 2018 was St. George’s Day. For us, though, it was the start of our second International Patient Workshop. This brought together 89 people – AKU patients, supporters, researchers and staff – from around the world to network and share advice. Patients came from as far off as Canada, the United States, Belarus, Jordan, Brazil and La […]

The University of Siena is a valued member of DevelopAKUre, the international consortium which we put together in 2012 to find a treatment for AKU. Although there are no clinical trial sites in Italy, some of the most important scientific work takes place in Siena. At the Laboratory of Cellular Biochemistry, scientists analyse samples taken from AKU patients on […]

There are over 7,000 identified rare diseases. Eighty per cent of them are genetic, like AKU. Together, they affect 3.5 million people across the United Kingdom. Each individual disease, though, only has a small patient population. Because of this, doctors, researchers and the public tend to overlook patients. Pharmaceutical companies often lack interest in developing cures. The drugs can be expensive and […]

On 21st March, Reece Edmends, our Admin and Communications Officer, went to a meeting of the Specialised Healthcare Alliance. It was held in the beautiful setting of the House of Lords. Here, Reece explains why he went and what was said. The NHS works through services being hired by one party (the ‘commissioner’) from another (the ‘provider’). Most commissioners […]

Dr. Nick Sireau is CEO of the AKU Society and Chair of Trustees. After his two sons were diagnosed with AKU, Nick became a trustee in 2003. He served first as CEO from 2010-2015 but returned to his old job in 2017 after a period at AstraZeneca. It is great having somebody with his experience back on board.As […]

In 2019, the AKU Society’s international clinical trial, DevelopAKUre, will end. We hope that it will prove that the drug nitisinone is an effective treatment for AKU. If this happens, we will apply to a body called the European Medicines Agency (EMA) for ‘marketing authorisation’. This means that we will be legally allowed to sell nitisinone anywhere in the European Union […]

On Wednesday February 28th the world marked Rare Disease Day. This annual event was set up by EURORDIS, a European alliance of rare disease patient groups, in 2008, to meet a pressing need. There were lots of days representing sufferers of specific diseases like AIDS and cancer, but nothing to represent rare disease patients. The last day of February is […]

The AKU Society is thrilled to introduce you to Jamie Rumbelow. Jamie is running the Edinburgh Half Marathon, part of Edinburgh’s annual Marathon Festival, on 27th May to raise money for us.Jamie lives in the beautiful Scottish town of St. Andrews. He is studying for a master’s degree in philosophy at the University of St. Andrews, which […]

Dr. Milad Khedr is a doctor at Royal Liverpool and Broadgreen University Hospitals. He is studying the effect of nitisinone on the tyrosine levels of AKU patients. Here, we ask him about his work. 1) What is the purpose of this study? Alkaptonuria (AKU) means that the body is unable to break down tyrosine, contained in protein […]

To make our website more accessible to visitors with different needs, the AKU Society has installed support software called Browsealoud from a company called Texthelp. This adds speech, reading and translation to our website to help people with dyslexia, low literacy, English as a second language and mild visual impairments. Here is a quick guide on how to use […]

In this week’s blog, we hear about Bob Montague, who went to the National Alkaptonuria Centre (NAC) for the first time this January. Now 70 years old, Bob read law at the London School of Economics, after which he went to work as a solicitor for a major London law firm. He then set up his own practice with […]

In December 2017, Reece Edmends, the AKU Society’s newly appointed Admin and Communications Officer, attended the National Alkaptonuria Centre (NAC) review with NHS England. He also sat in on the AKU Society’s scientific away day, held the day after.  This month, he saw the NAC itself for the first time. He writes about his experiences here: “On […]

We at the AKU Society would like to wish everyone a very happy New Year. As 2018 starts, we’d like to give you a preview of what’s in store for this year. On 23rd – 24th April, we will be holding our second International Patient Workshop at the Bluecoat in Liverpool. This will bring together AKU patients from all round the […]

So 2017 is finally coming to an end. This year has been one of our busiest yet, with THREE patient workshops, a flurry of fundraising activity and even a bit of globe-trotting to promote the AKU Society! We have lots of plans for 2018, which we will release early in the New Year. Now, it’s time to look […]

The AKU Society is currently supporting a PhD research project developed by Tanisha Spratt, of the University of Cambridge’s Department of Sociology. Here, Tanisha answers some of our questions. What were you doing before this PhD? I took a year out between my MA and PhD to travel, work and think more about my research project. I went […]

In 1897 Archibald (later Sir Archibald) Garrod was working as a doctor in London’s Great Ormond Street Hospital. A mother came in with a new-born child and a nappy, stained brownish-black. Interested, Garrod did some research. After a while, he found forty different cases of the disease. It seemed particularly common in the children of first cousins. It turned out […]

On Wednesday 22nd November, the AKU Society held its seventh Patient Workshop. Alkaptonuria (AKU) patients from all over the country, with their families and carers, flocked to the Bluecoat in Liverpool. A day of advice and networking was in store for them. Hannah Harrison, our Patient Support Manager, opened the morning. The workshop was, in large part, the result of […]

Here at the AKU Society we are very lucky to have so many talented and dedicated people working in association with us.Hannah Shepherd, of  Liverpool John Moores University, has been the gait analyst for the  National Alkaptonuria Centre since 2015. The NAC patients come to the lab at Liverpool John Moores annually – each patient, often through […]

Last week we welcomed Reece to the AKU Society’s team in Cambridge. As Admin and Communications Officer, he will be responsible for the team’s social media output, as well as a lot of our online and print advertising. His job also involves administering our patient communities, reporting to our trustees and to the Big Lottery Fund, organising […]

On 18th and 19th October, Hannah, our Patient Support Manager, and Carol, one of our AKU patients, went to the Birmingham NEC to run a stand at Best Practice 2017. In this week’s blog, we find out how they got on. Best Practice – a conference, exhibition and networking event for the primary care sector – […]

Last Month the National Alkaptonuria Centres’ new data controller, Leanne joined the NAC team. Her role will be assisting Hollie with the running of the centre and making sure all information is entered clearly and accurately. In this week’s blog, Leanne tells us a little bit about herself, what inspired her to work for the NAC and […]

So, me (Hannah from the gait lab) and my friend Steven have decided to take on the challenge of climbing to Everest Base Camp on November 14th. Of course, the charity of our choice is the AKU Society. The trek will take 15 days in total and will take us to the highest point at 5,545m. It […]

On Wednesday 26th July children with AKU from all over the country travelled to ZSL London Zoo for the AKU Society’s first ever Children’s Workshop. The day was designed to give an insight to children affected by AKU, and their parents, into the disease and what they can expect in the future. In today’s blog, […]

In today’s blog, we hear from Rory and Robin who are both leaving the AKU Society for pastures new. They will both be sorely missed by both patients and colleagues alike. Rory I started working for the AKU Society in September last year. The entire experience has been very positive and I will always closely follow what […]

In this week’s blog, we speak to AKU patient Antony Kelly. Antony has been kind enough to tell us about his experience with AKU, sharing his patient story with us he talks us through his initial diagnosis to how AKU affects him today. I was first diagnosed with AKU at only a few days old in […]

Oliver has worked at the AKU Society for the last 7 years, and has been CEO for the last 2. At the end of this week, he’ll be leaving to move into a new role at Roche but will still be helping rare disease patients to access new treatments. In today’s blog, Oliver talks about what’s happened […]

On Thursday, June 29th, Robin and Hannah travelled up to Liverpool for the 2017 Stand Up For AKU Comedy Night. Held at the Hot Water Comedy Club in Liverpool, the event had some of the local Liverpool circuits top comics billed to perform, with an exciting headline act from Ross Leslie.The hilarious Pam Ford was […]

On September 3rd the AKU Society will have 6 runners in the 2017 Spartan Race. This event has competitors take on a 5k course mixed with gruelling obstacles and endurance challenges. Our competitors have volunteered to take part in this event to raise some money for us here at the AKU Society. We caught up with some […]

On 26th July we are excited to be holding our first ever Children’s Workshop. This event will be a fun, child friendly day, which will also teach children about AKU.  Held at London Zoo, the workshop will have lots of exciting activities throughout the day. There will be animal encounters, interactive sessions, free time in the zoo itself and the […]

Support often comes from unlikely places, but it is safe to say we never expected to receive a donation from a dog training club in North Wales. We would like to say a huge thank you to the Pedwar Pawen Dog Training Club for donating £200 to the AKU Society, raised via their Charity Dog Show on […]

This week’s blog comes from the team at Costello Medical. They recently presented an incredible poster of National AKU Centre research at the InSPiRe (Innovation in Small Populations Research) conference.Costello Medical are a Medical Consultancy firm that provides scientific support to the healthcare industry in the analysis, interpretation and communication of clinical and health economic data. They are keen […]

On the 19th- 20th May, Oliver and Ciarán travelled to Budapest to represent the AKU Society at the Eurordis – Rare Diseases Europe, membership meeting. The annual event brings together patient groups from all over Europe for its annual general meeting and a day of informative talks on how best to represent their patients. In this week’s blog, […]

The Royal College of Nursing Congress is held each year to bring together over 4,000 nurses. Coming from a variety of areas to develop and learn nursing best practice, it is the biggest nursing event of the year. This year’s Congress was held in Liverpool at the ACC Liverpool from 13th – 18th May.Here at the AKU Society, we […]

The AKU Society is excited to announce that we are now accredited members of the Information Standard. The Information Standard is an initiative supported by NHS England that is designed to improve the quality of health and care information that is available to the public.It was set up to ensure that all information that falls […]

On April 28th our Admin & Events Officer Robin gave a presentation on local community fundraising events at the Findacure Community Fundraising Workshop. Speaking at the White & Case offices in London, the event had a range of fantastic speakers who gave presentations on a variety of fundraising related topics.After an introduction from Findacure Executive Director Flóra […]

On 23rd April Joe England successfully completed the London Marathon on behalf of the AKU Society. Joe raised a total of £1725, completing the race in 3:55:57. We are very appreciative of his brilliant effort. Coming up to the race it was not looking good for Joe, he suffered an injury to his knee two months before, […]

On Friday 10th and Saturday 11th March Hannah attended the 3rd UK Genetic Disorders Leadership Symposium. The goal of the symposium was to bring together leaders of UK based genetic disorder charities and other patient advocates to learn from experts in the field, network, and share best practices. The Hosts The event was presented by  Genetic Disorders UK in […]

Our Sixth Patient Workshop took place on Saturday. Held at Alexandra Palace it was a great venue that was well attended by AKU patients and their family members. In this week’s blog, we talk about how the day went. The day started out with smiles and greeting from the AKU team. As Ciarán welcomed patients into the building, […]

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 […]

Every year people from all over the word come together to celebrate Rare Disease Day. A day designed to raise awareness, bring together the community and to highlight some of the fantastic work that is being done in the rare disease area. This year was the day’s 10th anniversary and focused on research and how it […]

The AKU Society had seven places in this year’s Cambridge Half Marathon. With each of our brilliant runner’s fundraising for the AKU Society, they raised a fantastic combined total of £1609. Our Admin & Events Officer Robin tells us more about how the day went. Race day started cold, wet and windy on the Midsummer Common. However, this […]

On Saturday 18th March our Admin & Events Officer Robin took part in the Findacure Firewalk. This event had Robin get sponsored to walk over 800°C burning coals to raise money for the AKU Society! The event was held at Wilberforce Road Sports Ground, Cambridge. Robin and the other fundraisers, gathered inside the sports pavilion to meet the man who would […]

It’s now only 2 weeks until Rare Disease Day! On the last day of February every year, countries all over the world mark Rare Disease Day, a day designed to raise the profile of rare disease internationally and bring rare disease patients and organisations together. Each year, Rare Disease Day has a theme that is used to […]

The AKU Society is excited to announce that our 2016 Annual Review is now available for download. Our Annual Review is used to highlight all the hard work of the Society last year and will be used to promote the AKU Society at its various events throughout 2017. The document will also be sent to […]

March 5th is the date of the Cambridge Half Marathon. We have 9 runners taking part and in this week’s blog, we will introduce you to some of them. They are all raising vital funds for The AKU Society, so please follow their links and donate. Rory Munro, 29, Fundraiser, Cambridge 1. Why are you running the Cambridge half […]

On 18th February the AKU Society will be taking part in the Findacure Cambridge Firewalk! Firewalking gives participants a once in a lifetime opportunity to put their nerve to the test by walking over hot coals! Ran by specialist fire walking experts, this event is for those seeking a thrill, whilst having the chance to fundraise for […]

With Christmas all but over and the New Year well underway, we take a look at all the exciting plans we have for 2017. From fire walks to Children’s Workshops. Last year was amazing for everyone here at the AKU Society, from the incredibly successful International Patient Workshop to our first ever AKU Comedy night! There are […]

Now that 2016 is finally drawing to an end, we thought it would be a good opportunity to look back at what has been an incredible year and pick out some of the events that we are especially proud of. We hope you agree that this year has been one of our most exciting and productive […]

Last week, we welcomed Robin, to the AKU Society team! As our new Admin and Events Officer, he will organise fundraising events, help the rest of the team with the administration of the Society and all its projects, including the NAC and DevelopAKUre and report to the Big Lottery Fund twice a year to show the successful delivery of the reaching […]

November the 25th is an important day in The AKU Society’s calendar. On this day, we celebrate Garrod day which marks the birthday of Sir Archibald Garrod, the man who first described AKU. This important anniversary is celebrated by holding yearly Coffee Mornings. This year we went global, holding coffee mornings in Australia, Jordan, Germany and all over the […]

Today’s blog is all about a coffee morning Rory attended held in Bristol on Saturday the 19th of November, which was hosted by AKU Patient Ann Kerrigan. Last weekend, Rory travelled to Bristol to take part in the first of our 2016 Garrod day coffee mornings. The entire event was organised by Ann Kerrigan, a patient […]

The AKU Society has some great fundraising events coming up, so in today’s blog Rory talks about all the exciting things we have planned. These events will provide invaluable funds for AKU patients and will also allow us to spread information on the disease. If you can participate in any of these or if you want […]

This November is a very important month for the AKU Society and for AKU Patients everywhere, as it marks the four year anniversary of the DevelopAKUre consortium receiving the funding needed to begin the three groundbreaking studies into a potential treatment for AKU. Thought to be the first time a UK patient group has been […]

On the 15th October 2014, Robert Gregory sadly died. He was one of the most important figures in the history of the Society and is greatly missed. In testament to his achievements on this sad anniversary, we take the opportunity to remember some of the most important moments in the history of the AKU Society, which Robert Co-founded […]

Genetic Alliance UK is a national charity whose aim is to improve the lives of patients and families affected by all types of genetic conditions. They are an alliance of over 180 patient organisations. Their research and innovation in the field of genetic medicine is important to the AKU Society and other similar organisations. They provide a united […]

Last week, our new Fundraising Officer, Rory joined the AKU team. His role will focus on maximising revenue through funding applications, corporate partnerships and community fundraising. In this week’s blog, Rory tells us a little bit about himself, what inspired him to work for the AKU Society and what he hopes to achieve in the new role. […]

With 2015 drawing to an end, it is a time of reflection for the AKU team. In this week’s blog we highlight our key achievements of 2015!Last week the AKU team got together to reflect on the highs and lows of 2015. The meeting was a great opportunity for us to discuss our personal highlights and acknowledge […]

Since employing our first ever Fundraising Officer back in September 2015, we have massively expanded our community fundraising and raised lots of money and awareness for AKU. In this week’s blog, we highlight our key fundraising successes and look forward to what’s to come. Community fundraising is all about raising money, raising awareness and of course, […]

Yesterday was Oliver’s six year anniversary at the AKU Society. Lots has changed over the last few years and in today’s blog, he tells us about some of the achievements and challenges over that time. How has the AKU Society changed over the past 6 years? I started at the AKU Society back in 2010. Back then, […]

his week is Remember a Charity in Your Will Week, an annual awareness week designed to encourage more people to consider leaving a gift to charity when writing a will. This week’s blog highlights the importance of will writing, encouraging our supporters to take advantage of these services while supporting the great work of the AKU […]

In August, rare disease patient advocacy organisation, Global Genes hosted a webinar supporting rare disease patients to effectively communicate with their healthcare providers. This week’s blog highlights the key messages taken from the webinar. Global Genes, set up in 2009, champions the rare disease community by raising awareness and addressing the many challenges patients currently face. Their […]

Over the past month, Ciarán has travelled to London and Leicester to attend meetings held by the Specialised Healthcare Alliance (SHCA). In today’s blog, he explains why he attends these meetings and why the work of the SHCA is so important.The  SHCA is an important collation of 120 patient groups and 16 relevant corporate members who campaign […]

This week is Lydia’s last week at the AKU Society. We are sad to see her go and want to thank her for all she has achieved for AKU patients. In this week’s blog, Lydia shares her highlights, what she has learnt and her plans for the future. It has been a busy and enjoyable year as […]

Last week Eve attended a patient group workshop organised by Genetic Alliance UK, which aimed to understand the patient perspective on important issues affecting rare disease patients in Wales. This week’s blog highlights the key discussions taken from the workshop.Last Tuesday I travelled to Cardiff to attend a patient workshop designed to address key issues affecting […]

On Sunday 2nd October, AKU supporter, Katie will take part in the Cardiff Half Marathon to raise money for AKU. In this week’s blog, Katie shares why she is fundraising for AKU and how she plans to prepare for the big event Hiya, I’m Katie, a 22-year-old physiotherapist working in Cardiff. I enjoy playing netball and keeping […]

When AKU patients attend the National AKU Centre (NAC) they are advised to follow a controlled protein diet, as nitisinone affects their blood tyrosine levels. AKU dietitian, Shirley Judd helps patients change and manage their diet effectively. This week’s blog discusses the development of our first ever controlled protein recipe booklet and demonstrates one of the recipes […]

The Royal College of Nursing (RCN) Congress is the biggest event of the annual nursing calendar, with more than 4,000 nurses from all specialities and regions meeting to learn, share and develop nursing practice and influence health policy debates. This year the Congress was held in Glasgow from the 18th-21st June, Hannah and Lydia went up to […]

The National AKU Centre (NAC) opened its doors to the first AKU patients back in June 2012. It is now 4 years on and the NAC continues to grow and develop. Our Patient Support Manager, Hannah has been there from the very beginning and remains an integral part of the centre. In this week’s blog she discusses the […]

June this year is a very special month at the National AKU Centre (NAC) as AKU patients Sharon and Maureen will be attending for their 5th visit. The NAC opened its doors 5 years ago and welcomed Sharon and Maureen as their very first  patients. To mark this very special anniversary, Sharon shares her experiences over  years, […]

Last week our first ever AKU comedy night took place in Cambridge. This week’s blog talks about the big night and how such events are helping us to expand our community fundraising. Last Thursday, the AKU team were busy preparing for our first ever charity comedy night. Taking place at the Portland Arms pub in Cambridge, the venue provided […]

In this week’s blog, Oliver talks about attending the 8th European Conference on Rare Diseases and Orphan Products (ECRD) In Edinburgh.  Where he was asked to present DevelopAKUre as a game changer in drug development, authorisation and access. Oliver also explains the important initiatives announced and how they can help AKU patients. The ECRD is the biggest patient […]

In the rare disease world, communication is king. Patients must communicate with those around them in order to get support, much needed help and to raise the profile of their disease. For rare disease patient groups, effective communication is just as important. Without effectively communicating to those who hold a real stake in the work we do, […]

Last Month Eve and Hannah met Rheumatology patient, Shanali Perera at the BSR conference in Glasgow. In this week’s guest blog, Shanali shares her experience of becoming a patient in her own speciality and how digital art therapy has supported her in taking control and managing her long-term condition. Meet Shanali I am currently a patient […]

This week is mental health awareness week, designed to raise awareness of mental health issues, encourage open discussions and push for improvements to these underfunded services. This week’s blog talks about the importance of managing mental health effectively with an emphasis on mental health in long-term conditions.1 in 4 people in the UK will experience a […]

The Robert Gregory National AKU Centre (NAC) opened in Liverpool in 2012, providing annual health assessments and access to the drug nitisinone to AKU patients over 16 living in England and Scotland. In this week’s blog we introduce Shelley Jones, who took over as Managerial Lead for the NAC in August 2015. Shelley shares what inspired her […]

Last week Eve and Hannah travelled all the way up to Glasgow to exhibit at the Rheumatology Conference held at the Scottish Exhibition and Conference Centre. This week’s blog talks about the big event and the importance of raising awareness of AKU among healthcare professionals.The  British Society for Rheumatology conference took place on 26th – 28th April […]

Last week our first International Patient Workshop took place in Liverpool, bringing together the biggest collection of AKU patients ever! In this week’s blog, find out more about the day and the importance of supporting our international patients and their families, to build a strong, supportive AKU community.Our International Patient Workshop really was a monumental occasion. This […]

Today we are hosting our first ever International Patient Workshop in Liverpool. In honour of this monumental occasion, we are introducing 2 of our international patients who have travelled all the way from Canada and Argentina to attend the workshop. In this week’s blog they share their AKU story and what the workshop means to them. Meet […]

Next week our first ever International Patient Workshop will take place in Liverpool. We have had lots of support for our fundraising campaigns, and that has allowed us to offer travel grants so AKU patients from around the world can attend. This week’s blog introduces two of our international patients from Sweden and Jordan, who share their […]

On 23rd March, Genetic Alliance UK launched a new patient charter on access to medicines for rare disease patients in Scotland. This week’s blog highlights the important recommendations generated from the project, where a range of patient organisations gave their perspective. Genetic Alliance UK is an alliance of over 180 patient organisations, set up to improve the […]

Last week, Oliver presented the DevelopAKUre project at a meeting for the Dutch Organisation of Biotechnologies Companies (HollandBIO). DevelopAKUre has close links to the Dutch company, PSR, who act as the medical monitors in our clinical trials. This week’s blog talks about highlights from the meeting and why DevelopAKUre is such a great example of patient engagement […]

Last week, Cambridge Rare Disease Network (CRDN) organised an event designed to encourage discussion about the potential need for a rare disease home nursing service. This week’s blog talks about the important messages taken from the event. There are over 7,000 recognised rare diseases affecting 350 million people worldwide. These 7,000 rare diseases have a wide range […]

The AKU Society has been doing lots of fundraising to raise money for our first International Patient Workshop due to take place on 20th April. In this week’s blog we introduce some of our Cambridge Half Marathon runners and explain our plans to expand our community fundraising. The Cambridge Half Marathon will take place on Sunday 28th February […]

The AKU Society’s office is based in the beautiful city of Cambridge, and on 28th February we were lucky enough to have nine brave supporters taking part in the Cambridge Half Marathon for AKU! We are thrilled to announce that in total they raised a huge £2,427, which will all be going towards helping patients attend […]

On 29th February, we celebrated Rare Disease Day – a day designed to raise awareness of rare diseases, encourage service improvements and ensure that patients’ voices are heard. The theme of the day was appropriately named, ‘Patient Voice’, and the AKU team joined thousands around the world to come together in solidarity and mark the occasion. In […]

This week’s blog comes from Ciaran McCarron, an MSc student who has led a project for the AKU Society looking at the cost effectiveness of nitisinone (the drug we trial in DevelopAKUre).The project will allow DevelopAKUre to gain an in-depth understanding of the cost effectiveness of the drug which will be built upon when we […]

In December, I attended a seminar that bought together medical experts, patients and patient representatives to discuss the difficulties and challenges faced by chronic pain patients. This week’s blog highlights the important discussions and messages that were taken from the day. It is estimated that 14 million people live with chronic pain in England. Living with chronic […]

Last week I attended a symposium in Brussels on Improving Patient Access to Rare Disease Therapies. By involving all stakeholders and collaborating on a European level, we can ensure that all patients have access to live-saving approved treatments. This week’s blog discusses the important messages and discussions taken from the event.The multi-stakeholder symposium was organised by Eurordis, a […]

We recently attended an online webinar organised by Findacure and Healx, explaining the concept of drug repurposing. This is something that is very relevant to the AKU Society and our patients, as the drug we are currently trialling as a part of DevelopAKUre, nitisinone, is a repurposed drug. This week’s blog discusses drug repurposing and its benefits […]

With Christmas all but over and the New Year well underway, we take a look at all the exciting plans we have for 2017. From fire walks to Children’s Workshops. Last year was amazing for everyone here at the AKU Society, from the incredibly successful International Patient Workshop to our first ever AKU Comedy night! There are […]

This week Ciarán has joined our team as our new Admin Assistant! In this weeks blog, he tells us about himself and what motivated him to apply for the role! What were you doing before you joined the AKU Society? I just moved from Leicester where I was working for a charity called VALUES that cared for adults […]

Last Friday the AKU team had a training session with Sookio, a communications for the web and social media organisation. This week’s blog talks about the many tips and skills we learnt throughout the session! Writing for the web is an important part of the AKU Societies work. With AKU patients so sparsely located around the world […]