📅 Date: 8 August
🎯 Organised by: Target CSF Leaks
📍 First observed: 2025
Welcome to National CSF Leak Awareness Day 2026.
Date: Saturday 8 August 2026
Theme: Share Your Story.
Each year on 8th August, we come together to raise awareness of cerebrospinal fluid (CSF) leaks, improve understanding of this often misunderstood condition, and support everyone whose life has been touched by a CSF leak.
This year is especially meaningful for us, as it also marks two years since Target CSF Leaks officially became a registered charity.
While we’re incredibly proud of everything we’ve achieved together, this day isn’t about us.
This day is about you.
It’s about every person who has spent months or years searching for answers.
It’s about those who have felt dismissed, misunderstood or unheard.
It’s about those living with ongoing symptoms, those recovering after treatment, and those supporting a loved one through their journey.
Behind every diagnosis is a person with a story.
This National CSF Leak Awareness Day, we’re shining a light on those stories because every voice matters, every experience is unique, and every story has the power to help someone else feel less alone.
Thank you for being here, and thank you for helping us raise awareness of CSF leaks.
This Year’s Campaign –
Share Your Story
This year’s National CSF Leak Awareness Day is centred around one simple message:
Every patient has a story worth telling.
Throughout the day, we warmly invite members of our community to share their experiences, if they feel comfortable doing so.
Whether your journey began recently or many years ago, whether you’re still searching for answers or you’ve found your way through treatment and recovery, your experiences matter.
Sharing your story doesn’t just help raise awareness of CSF leaks.
It helps others realise they’re not alone.
It gives hope to those who may be struggling.
It helps families, friends and healthcare professionals better understand the reality of living with a CSF leak.
It also helps those closest to you gain a deeper understanding of your own journey, your challenges and the impact a CSF leak can have on everyday life. Sometimes, your story can say the things that are difficult to put into words.
Your story can be as long or as short as you like. You might want to share:
- When your journey began.
- The biggest challenge you’ve faced.
- What finally helped you find answers.
- What has given you hope.
- A message for someone who is just starting their own journey.
Join the conversation by sharing your story on social media, commenting on our posts throughout the day, or creating your own post and tagging Target CSF Leaks.
Collectively, we can ensure that the voices of people living with CSF leaks are heard.
❤️ Join us for an Open Leaky Café
As part of the day, we will be hosting an open Leaky Café session from 11am to 1pm (UK time) via Zoom.
Leaky Café has always been at the heart of our community, providing a safe and supportive space for people affected by CSF leaks to connect with others who truly understand.
Whether you want to share your own experiences, ask questions, listen to others, or simply spend some time with people who understand the challenges of living with a CSF leak, everyone is welcome.
You don’t have to share your story.
You don’t have to have all the answers.
Sometimes, simply knowing you are not alone can make a huge difference.
To join the open Leaky Café session, please join our Target CSF Leaks Community Forum, where the access link will be shared.
We look forward to welcoming you. ❤️
How to Get Involved
There are lots of ways you can support National CSF Leak Awareness Day and help us spread awareness.
❤️ Share your story. Your experiences could make all the difference to someone who is feeling lost or alone.
❤️ Join the conversation. Throughout the day, we’ll be sharing posts celebrating our community, raising awareness and highlighting the support available. We’d love you to comment, share your thoughts and engage with others.
❤️ Share our posts. Every share helps us reach more people, whether that’s someone living with unexplained symptoms, a family member looking for answers or a healthcare professional wanting to learn more.
❤️ Explore our resources. Take some time to browse our website and share anything you think others may find helpful.
❤️ Tell someone about CSF leaks. Sometimes a simple conversation can make a real difference. Awareness starts with understanding.
❤️ Support our work. Whether you’re a member, donor or supporter, your continued encouragement helps us provide trusted information, practical resources and a welcoming community for people affected by CSF leaks.
Most importantly, remember that awareness isn’t just about facts and figures.
It’s about people.
That’s why this National CSF Leak Awareness Day is dedicated to you.
Thank you for helping us ensure that no one has to face a CSF leak alone.
Highlights from 2025
Our awareness campaign ran throughout the day, sharing:
- The HEAD acronym – a simple memory aid for recognising potential CSF leak symptoms
- Red flag signs such as orthostatic headaches
- Why lumbar punctures are not a reliable diagnostic tool for CSF leaks
- First-line treatment options like blood patches, including when they may not be effective
- The urgent need for system change so more hospitals can treat patients locally
- Personal advocacy tips for those navigating diagnosis and care
CSF leaks are real.
They are life-altering.
And they are too often missed.
💡 Why This Day Matters
CSF leaks are often misdiagnosed, leading to unnecessary suffering and long delays in treatment. By making them a recognised part of the national awareness calendar, we aim to:
- Help more patients get timely diagnosis and care
- Reduce the travel burden on patients seeking specialist treatment
- Encourage more clinicians to develop the skills to treat leaks locally
🎨 Historic Themes
We aim to add to this list each year to track the themes and focus areas of National CSF Leak Awareness Day.
2026: Share Your Story
2025: “It’s time…”
🧾 Who We Are
Target CSF Leaks is a UK charity working to improve care for those affected by cranial and spinal CSF leaks. We raise awareness, share resources, and fight for earlier diagnosis and effective, targeted treatment access across the UK.