It’s been an insightful and transformative year at the AKU Society. I’m Georga, Communications Officer here at AKUS, and we wanted to take a moment to look back on everything that’s happened in 2025, as well as share some of the exciting plans already taking shape for 2026.
With Hannah and I only having worked together for seven months so far, this year has been full of brainstorming, learning, and trying out new ideas. Now, as we look ahead, we’re heading into 2026 feeling energised and inspired, with plenty of new projects on the horizon. Here’s a look behind the scenes at what we’ve been up to.
Nick on RareonAir
Kicking things off in early 2025, Nick appeared on the EURORDIS RareonAir podcast, where he reflected on his journey as a parent of two sons with AKU – and how that experience had inspired him to establish the AKU Society. He shared memories from the early days of the charity, spoke about the challenges the community faced in securing approval for nitisinone, and looked back on the many years of international collaboration that finally brought treatment within reach.
Nick also explored the promise and complexity of repurposing drugs for rare diseases, highlighting how the determination of the AKU community continues to show the true power of patient advocacy.
Starting at the AKU Society and My First Patient Week in Liverpool
In May, I joined the AKU Society. Coming from a science marketing and events background, I had plenty to learn – but seven months in, I can genuinely say how grateful I am to be working in the rare disease space. I’ve met inspiring, admirable people and learned so much about the challenges faced by those living with AKU and other rare conditions.
I began my role with a Patient Week in Liverpool. For anyone unfamiliar, small groups of patients attend their annual appointments at the National Alkaptonuria Centre each year. This was my first time meeting people with AKU and my first glimpse into just how intense those schedules are. I heard stories about diagnosis, the emotional impact of living with AKU and the day-to-day struggles.
After that week, it was obvious that while physical appointments are essential, mental health and wellbeing support is equally important – especially for anyone living with a chronic condition. This theme has come up again and again throughout the year, and it’s something we’re committed to focusing on more in 2026.
SelfCare4Rare, Awareness Events & Guest Speakers
In July, we launched SelfCare4Rare, a brand-new initiative to support people with AKU physically, mentally, and emotionally. We were joined by two fantastic guest speakers:
- Jim Fish, a certified Aquatic Fitness Instructor, Swimming Fundamentals Coach- and person with AKU – who joined us live from the water. He shared insights on water-based exercise, body confidence, overcoming worries about swimwear, recovery after surgery, and the mind-body connection.
- Campbell Gillespie, who delivered an incredibly moving session titled “The Lightning Man.” After being struck by lightning and declared clinically dead, he survived thanks to a friend’s quick thinking. His recovery journey was powerful, emotional, and truly inspiring.
Over the summer, Hannah and I continued brainstorming and decided to trial more virtual sessions and create themed campaigns around awareness days relevant to the AKU community. We also identified conferences we wanted to attend, not only to learn from others in the rare disease space, but to gather ideas to shape a possible event in 2026.
Lab Visit to Liverpool
Another highlight was visiting the research labs at the University of Liverpool. We met the team and learned about the wide range of projects underway – from studying the structure of homogentisic acid and analysing donated tissue and cartilage, to researching the effects of tyrosine and exploring mRNA therapy.
Juliette and Brendan also wrote two brilliant scientific blogs this year, which we highly recommend reading:
- https://akusociety.org/aku-joint-donation-how-can-it-help/
- https://akusociety.org/international-metabolic-health-day-10th-oct/
FDA Approval of Harliku
July brought a historic moment for the AKU community: the FDA approval of Harliku (nitisinone) for adults in the U.S. Based on data from NIH studies led by Dr. Wendy Introne, nitisinone showed meaningful improvements in pain, energy levels, and aspects of physical functioning. This milestone marks an important step forward for patients in the U.S!
You can find out more about getting support with harliku here:
https://cyclevita.life/select-a-treatment/harliku-nitisinone-tablets/
Pain Awareness Month
In September, we took part in Pain Awareness Month, which aligned perfectly with SelfCare4Rare. Pain is not just physical, it carries a huge emotional component too, something highlighted in our virtual session with Dr Andy Jones, Pain Specialist from the NAC.
We also hosted our virtual coffee session, “Easing Aches and Pains,” which more than 20 of you attended. Hearing how each of you experiences pain so differently was incredibly valuable, and we’ve captured these insights in a dedicated blog post.
Hannah’s One-Year Milestone
This year also marked Hannah’s first full year at the AKU Society. She continues to travel to Liverpool each month to welcome patients for their annual appointments and support people within the AKU community, including those newly diagnosed with AKU. Here’s what she had to say:
Our First Conference: The Rare Disease Showcase
In October, we attended our very first conference as exhibitors – the Rare Disease Showcase in Manchester. It was our debut representing the AKU Society at a stand, and the day was filled with powerful talks, emotional personal stories, and important discussions about the rare disease landscape. We truly loved connecting with so many incredible people across the rare disease community and sharing more about the AKU Society and the work we do.
Looking Ahead to 2026
We’ve got exciting plans already underway for 2026. We’ll be exhibiting at the RCN Congress in Liverpool, continuing our mission to raise awareness of AKU. Many people are still misdiagnosed or must advocate for themselves because doctors may never have heard of AKU, so this work remains vital.
We’ve also been attending other events connecting with professionals in the wellbeing and rare disease space and learning from both communities. The event gave us plenty of creative inspiration and a few ideas brewing for a potential AKU Society event in 2026!
We’ll also be continuing the projects you engaged with most this year:
- SelfCare4Rare returns in July
- Pain Awareness Month in September
- More virtual sessions
- And potentially an in-person event (watch this space!)
As always, we want to learn from you and support you in the ways that matter most.
Starting 2026 with Veganuary
After a year of trying new things, gathering insights, and meeting with partners behind the scenes, we’re kicking off 2026 with Veganuary! Hannah and I will be going vegan for the month and tracking it all, focusing on protein control and experimenting with beans and pulses. Clare, our dietitian at the NAC, will also be joining us for a talk on the benefits of a plant-based diet. Stay tuned for updates – from our Veganuary challenge to other exciting things we hope to share throughout January.
Here’s to wrapping up a busy year and stepping into an exciting new one together. Thank you to everyone we’ve had the pleasure of collaborating with this year!