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🌿 Today is International Self Care Day!

Self-care looks different for everyone. Sometimes it's getting outside for a walk, spending time in the garden, listening to music or simply enjoying time with family. It's about making time for the things that help you relax, recharge and bring you joy.

During our Self Care for Rare event, we asked members of our community to share the hobbies and activities that bring them joy. Here are just some of their wonderful responses.

✨ Why not make time for one thing that brings you joy today?

If you're looking for more ideas and practical tips to support your wellbeing, you can now watch all of our Self Care for Rare 2026 recordings on YouTube.

#InternationalSelfCareDay #SelfCareForRare #AKUSociety #Alkaptonuria #RareDisease #RareDiseaseCommunity #Wellbeing #SelfCare #LivingWithAKU #PatientCommunity by @akusociety

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2 days ago

📅 A new year of awareness, connection and community starts here.

We're excited to share our 2026/27 Campaign & Awareness Calendar, highlighting the key dates we'll be marking over the coming year.

Whether it's celebrating milestones, raising awareness of AKU, sharing practical wellbeing advice or bringing our community together, there's lots to look forward to.

Stay tuned-we've got plenty planned!

#AKUSociety #Alkaptonuria #RareDisease #RareDiseaseAwareness #SelfCareForRare #Community #PatientAdvocacy #LivingWithAKU by @akusociety

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4 days ago

Looking for some simple ways to look after your wellbeing? 🌿

Inspired by the practical tips and advice shared during Self Care for Rare 2026, we've created this bingo card to help you build small moments of self-care into your day.

How many can youHow many can you tick off? ✔️

If you missed this year's event, or you'd like to revisit your favourite sessions, you can now watch the recordings on our YouTube channel.

#SelfCareForRare #AKUSociety #Alkaptonuria #RareDisease #RareDiseaseCommunity #Wellbeing #SelfCare #ChronicIllness #LivingWithAKU by @akusociety

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4 days ago

Today is Chronic Disease Day, a day to raise awareness of the impact of living with long-term conditions and to recognise the resilience of those navigating them every day.

At the AKU Society, we're proud of the strength, support and sense of community that exists here. Living with AKU brings its challenges, but it also creates opportunities to learn from one another and share experiences that can make a real difference.

Whether you've been diagnosed recently or have been living with AKU for many years, your story has the power to encourage and support others.

Take a moment to read these reflections from our Self Care for Rare community, and if you'd like to add your own, we'd love to hear from you in the comments. 💬

#ChronicDiseaseDay #ChronicDisease #AKU #Alkaptonuria #RareDisease #RareDiseaseCommunity #SelfCareForRare #PatientVoice #LivingWithAKU #CommunitySupport by @akusociety

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16 days ago

🎉 That's a wrap - our full speaker line-up for Self Care for Rare 2026 has now been announced!

We're incredibly excited to welcome a fantastic mix of clinicians, researchers, wellbeing practitioners and inspirational speakers, all coming together to share their knowledge, experiences and practical advice with the AKU community.

Whether you're looking to learn more about managing pain, hear the latest AKU research updates, discover new wellbeing techniques or simply connect with others who understand, we hope there's something in the programme for everyone.

Self Care for Rare is just around the corner, register now for free and join us!

#SelfCareForRare #AKU #Alkaptonuria #RareDisease #Wellbeing #AKUCommunity by @akusociety

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a month ago

📅 Self Care for Rare 2026: The Full Agenda Is Here!

We're excited to share the full programme for this year's Self Care for Rare event.

Self Care for Rare is all about taking time for yourself, connecting with others who understand life with AKU, and discovering practical tools, fresh perspectives and new ways to support your wellbeing.

Whether you're living with AKU, supporting a loved one, or simply looking to connect with the community, we hope you'll join us for what promises to be a valuable and uplifting day.

📅 Thursday 2nd July 2026
💻 Online | 9am–5:30pm (BST)

#SelfCareForRare #AKU #Alkaptonuria #RareDisease #AKUCommunity #Wellbeing #SelfCare #PainManagement #AKUResearch #RareDiseaseSupport by @akusociety

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a month ago

🔬 Meet Our Next Self Care for Rare Speaker!

We're delighted to announce that Dr Brendan Norman will be joining us at Self Care for Rare 2026 as part of our AKU Research Update session.

Brendan is an AKU researcher at the University of Liverpool and has been involved in AKU research for many years, working closely with Professor Ranga and the wider research team to improve our understanding of the condition and explore potential future treatments.

At Self Care for Rare, Brendan will join Professor Ranga and Dr Juliette Hughes to share the latest updates from the world of AKU research and provide insights into the work currently taking place.

This is a fantastic opportunity to hear directly from researchers dedicated to advancing knowledge and improving outcomes for people living with AKU.

📅 Thursday 2nd July 2026
💻 Online | 9am–5:30pm (BST)

🎟️ Registration is now open - sign up via the link in our bio.

#AKU #Alkaptonuria #AKUResearch #RareDiseaseResearch #SelfCareForRare #RareDisease #UniversityOfLiverpool by @akusociety

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a month ago

We are delighted to share some wonderful news with our AKU community.

Professor Ranganath has been appointed a Member of the Order of the British Empire (MBE) in the King's Birthday Honours for services to people with Alkaptonuria (AKU) 🎉

Many of you will know Professor Ranganath through his work with the National Alkaptonuria Centre (NAC), his involvement with the AKU Society, and his dedication to improving the lives of people affected by AKU over the past two decades.

As a co-founder and trustee of the AKU Society, Professor Ranganath has played a pivotal role in advancing AKU care and research. He was instrumental in establishing the NAC and coordinated the DevelopAKUre programme, which ultimately contributed to the approval of nitisinone as the first pharmacological treatment for adults with AKU.

He has always been quick to point out that achievements in AKU are never the result of one individual alone. He sees this honour as a reflection of the dedication and collaboration of patients, families, clinicians, researchers, patient organisations and industry partners who have worked together to drive progress in AKU.

We know many members of our community have been personally supported by Professor Ranganath over the years, and we're sure you'll agree that this recognition is incredibly well deserved.

👏Please join us in congratulating Professor Ranganath on this wonderful and well-deserved honour.

You can read more on the AKU Society website under our blogs section (see bio)

#AKU #Alkaptonuria #RareDisease #MBE #AKUSociety by @akusociety

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a month ago

💙 Why join Self Care for Rare 2026?

We know that living with AKU, or supporting someone who does, can be challenging.

Pain, fatigue, appointments, uncertainty, caring responsibilities... it can all take its toll. That's why we've created Self Care for Rare: a day dedicated to wellbeing, learning, connection and support within the AKU community.

We know joining a virtual event can feel a little daunting, but we really encourage you to give it a try. Even if you come away with just one new idea, one helpful conversation, or one piece of advice that makes a difference, then the day has been worthwhile.

And remember, these wellbeing sessions aren't just for people with AKU. They can also be valuable for family members, carers and anyone supporting a loved one living with the condition.

📅 Thursday 2nd July 2026
💻 Online (Zoom)
🎟️ Free to attend

🔗 Registration is now open via the Eventbrite link in our bio.

#AKU #Alkaptonuria #SelfCareForRare #RareDisease #Wellbeing #PatientSupport #RareDiseaseCommunity by @akusociety

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a month ago

💬 Meet Our Next Self Care for Rare Speaker!

We're pleased to welcome Dr Andrew Jones, Pain Specialist for the National Alkaptonuria Service, to this year's programme.

Living with chronic pain can affect so much more than just the body. Dr Jones will be leading "Much More Than It Hurts", a session exploring the wider impact of pain and its effect on daily life and wellbeing.

As a long-standing member of the National Alkaptonuria Service, Dr Jones brings a wealth of expertise in pain management and a deep understanding of the challenges faced by people living with AKU.

💙 We're delighted to have him as part of this year's event.

📅 Thursday 2nd July 2026
💻 Online

#AKU #Alkaptonuria #SelfCareForRare #PainManagement #RareDisease #Wellbeing by @akusociety

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a month ago

🔬 Meet Our Next Self Care for Rare Speaker!

Research is helping to improve our understanding of AKU and shape the future of care for patients.

That's why we're delighted to welcome Dr Juliette Hughes to Self Care for Rare 2026.

A Lecturer in Anatomy at the University of Liverpool, Juliette has been involved in AKU research for many years and is passionate about improving understanding of the condition.

As part of our AKU Research Update session, Juliette will join fellow researchers to share insights from the world of AKU research and discuss the work taking place to improve outcomes for people living with AKU.

📅 Thursday 2nd July 2026
💻 Online

Don't forget to register for Self Care for Rare via the Eventbrite link in our bio.

#AKU #Alkaptonuria #AKUResearch #SelfCareForRare #RareDiseaseResearch by @akusociety

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a month ago

📢 Speaker Announcement!

We're excited to welcome Connor Peebles to Self Care for Rare 2026.

Connor was diagnosed with vascular Ehlers-Danlos Syndrome (vEDS) in September 2024. While his diagnosis brought challenges, it also strengthened his determination to raise awareness and support others affected by rare conditions.

Connor will be sharing his personal journey and delivering a motivational talk on resilience, overcoming challenges and finding strength through adversity.

📅 Thursday 2nd July 2026
💻 Online
✨ Stay tuned - we'll be introducing more speakers over the coming weeks!

#SelfCareForRare #AKU #Alkaptonuria #RareDisease #RareDiseaseCommunity #LivedExperience #MotivationalSpeaker #Wellbeing by @akusociety

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2 months ago