AKU Society

Today we’re at the Manchester Rare Disease Showcase, hosted by Beacon for Rare Diseases! 🌟 We’ve loved meeting so many passionate people across the community. If you’re here, come find us-we’d really love to connect. The morning has been packed with powerful talks on the rare disease policy landscape, deeply moving personal stories, and eye-opening insights into early access for investigational medicines. The energy in the room is incredible, and we can’t wait to see what the afternoon has in store! #RareBeacon #Rareshowcase2025

🎉Happy Garrod Day! Today we’re marking #GarrodDay - a celebration of the breakthrough that changed our understanding of Alkaptonuria (AKU) and laid the foundations for modern metabolic genetics. In 1902, Sir Archibald Garrod made a discovery far ahead of its time: AKU wasn’t caused by infection or environment, but was inherited. His work introduced the concept of inborn errors of metabolism, shaping how rare metabolic conditions are understood today. This year, we’ve created a Garrod Day Wordsearch and a new Garrod Day factsheet to help people learn more about his discovery and why it still matters. ✨ Want to dive deeper? Read our 2022 blog written by Professor Ranganath, where he explores Garrod’s research in depth and explains how his insight continues to shape the understanding and treatment of AKU today. https://lnkd.in/eRQW97zW #GarrodDay #AKU #RareDisease #InbornErrorsOfMetabolism #Genetics #MetabolicMedicine #AKUSociety #HealthcareInnovation

It’s been a busy weekend at the AKU Society!🌟 Hannah and Georga spent two days in Birmingham building relationships, listening to community experiences, and gathering ideas to strengthen the support we offer to people with AKU and their families. We started at the #MindBodySpiritFestival, exploring how mindfulness and holistic wellbeing practices could support people living with Alkaptonuria and improve mental health. It was a fantastic opportunity to network, gather fresh ideas, and spark inspiration for a potential AKU Society event in 2026. 💬 What would you love to see from us next year? Let us know! We then headed to the Metabolic Support UK Community Conference (#CC25) to show our support, connect with the community, and learn from the experiences of patients, families, and fellow rare disease organisations. The atmosphere was incredibly warm, with thoughtful conversations and impactful sessions on reclaiming Joy and understanding the current rare disease landscape. The MSUK team were as welcoming as ever!🌟 #AKUSociety #RareDisease #MindBodySpirit #HolisticHealth #MetabolicSupportUK #PatientCommunity #Mindfulness #RareDiseaseCommunity #CC25

We’re proud to be joining this year’s Manchester Rare Disease Showcase! The event brings together organisations, researchers, and advocates from across the UK - all dedicated to improving the lives of people living with rare diseases. 💙 We’ll be there to talk about Alkaptonuria (AKU) and the work we do to support patients, families, and research into this rare condition. If you’re attending, come and say hello to the AKU Society team - it’s a great chance to meet others in the rare disease community and learn from inspiring organisations and individuals.🌟 #RareShowcase25 #AKUSociety #Alkaptonuria #RareDisease #RareCommunity

Did you catch our latest blog for Bone and Joint Health Week? Our newest post highlights vital research from the University of Liverpool, where Dr Juliette Hughes and Dr Brendan Norman are uncovering how AKU affects joints and cartilage. Their work explores what researchers have learned from joint donations from people with AKU - and how these discoveries are helping us better understand and treat this rare form of osteoarthritis. 💙 🔗 Read the blog: https://lnkd.in/eBc_Rmsd #BoneAndJointHealth #AKU #RareDisease #Osteoarthritis #Research #LiverpoolUniversity #AKUSociety #BoneAndJointActionWeek #ScienceForGood #MusculoskeletalHealth

In recognition of International Metabolic Health Day (10th October), researchers Dr Brendan Norman and Dr Juliette Hughes from the Department of Musculoskeletal and Ageing Science, University of Liverpool, have written a new piece for the AKU Society. They discuss how ongoing AKU research explores multiple “terrains” of metabolic health - including toxic burden, oxidative stress, and microbiome imbalance - and how metabolomic profiling can reveal a ‘snapshot’ of a patient’s metabolic health. 🔗 Read the full blog here: https://lnkd.in/e5-5kSQH #InternationalMetabolicHealthDay #AKUResearch #MetabolicHealth #RareDisease

📢 We’re always happy to share opportunities that may benefit our community. Cycle Pharmaceuticals are hosting an important online webinar we think will be of real interest to you and your healthcare team:

Today is International Self-Care Day, a vital reminder of the importance of looking after our physical and emotional wellbeing.   To mark this day, we’re proud to share two new blogs from our recent Self-Care 4 Rare campaign, each exploring how thoughtful, realistic self-care can make a difference managing life with AKU.   Our latest blogs focus on two vital aspects of self-care:   • Physical self-care - Insights from AKU patient and aqua fitness coach Jim Fish, Pilates instructor Sian Williams, and a post-surgery patient highlight how gentle movement can support pain management and restoring strength.   • Emotional self-care - In collaboration with Rareminds, this blog explores the emotional challenges of AKU, from long waits and fatigue to feeling unseen, and shares supportive, self-care approaches to manage them.   Read both blogs here: https://lnkd.in/ecUNB5gV   ✨On this International Self-Care Day, we encourage you to explore the insights and tools shared by our community and let's remember to take care of ourselves every day, not just today. ✨   #InternationalSelfCareDay #SelfCare4Rare #AKUSociety #RareDiseaseAwareness #MentalHealthSupport #PhysicalWellbeing #Rareminds #ChronicIllnessCare

For AKU patients in the U.S., this marks a long-awaited breakthrough, absolutely fantastic news!

📢 A milestone moment for the AKU community in the United States We’re excited to share that HARLIKU™ (nitisinone) is now commercially available in the U.S. - the first and only FDA-approved treatment for Alkaptonuria (AKU)! This marks a major step forward for patients, offering a licensed option to reduce homogentisic acid (HGA) levels, shown in clinical studies to improve outcomes related to pain, energy, and physical functioning. We’re proud to share this milestone and continue advocating for better treatment and care worldwide! 🔗 Learn more: https://harliku.com/ 📰 Read the full press release from Cycle Pharmaceuticals: https://lnkd.in/erSpyNwr 📄 View the prescribing information here: https://lnkd.in/eGAQzGE6 #Alkaptonuria #AKU #HARLIKU #CyclePharma #CycleVita #RareDisease #PatientSupport