Members
Welcome to CSF Leak Week!
CSF leaks are hard to spot. If you’ve never heard of it and you have the symptoms, awareness could be life-changing.
If this week you find yourself thinking, “I wonder…” — that moment could lead to the right diagnosis and a full recovery for you or someone you know.
Together, we can all make a difference!
So, what is a CSF Leak then?
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Every Story Matters
CSF leaks don’t look the same for everyone—but they all have one thing in common: they turn lives upside down.
Throughout CSF Leak Week, we’re giving a voice to people living with CSF leaks. You’ll hear directly from ‘Leakers’ as they share their personal journeys—stories of struggle, resilience, misdiagnosis, recovery and hope.
By showing these real experiences, we aim to raise awareness, challenge misconceptions, and show the many different ways a CSF leak can affect daily life.
Together, we can help more people recognise the signs, feel less alone, and get the diagnosis and care they deserve.
👉 Follow along all week and share these stories to help reach someone who needs them.
How to Get Involved
There are so many ways you can help raise awareness this Leak Week—every action makes a difference.
📢 Spread the Word
Share our social media posts, talk to friends, family, and colleagues, and help others understand what CSF leaks are—and why awareness matters.
👉Share our digital factsheets and resources
#CSFLeakAssociation #CSFLeak #CSFLeakWeek #CSFLeakWeek2026 #CSFLeakAwareness
👩⚕️ Share with Healthcare Professionals
Help clinicians recognise the signs sooner.
Share our Guideline and factsheets with GPs, A&E departments, and other healthcare professionals.
👉Download and share medical guideline and factsheets
👉See resources on mobile via linktreee
👉 Or Use our short form to request printed guideline and factsheets that will be sent to you for sharing with your healthcare professionals. Please note material will be dispatched in July.
🎉 Fundraise Your Way
Support our work by setting up your own fundraiser—big or small, every effort matters.
👉 Start fundraising today and make a real difference.
Your support helps us to:
Raise vital awareness among GPs, emergency teams, and specialists
Educate healthcare professionals to recognise symptoms early and act quickly
Support individuals affected by CSF leaks
Develop key projects such as Medical Guidelines and a Patient Registry to improve diagnosis and treatment
Prevent avoidable harm and reduce pain
Advocate for best practice care so patients are heard, believed, and treated effectively
🫶Together, we can change the journey
CSF leaks are misunderstood and underdiagnosed, leaving people living with incapacitating symptoms for months or even years without the right treatment. Many face misdiagnosis, repeated procedures, and a lack of awareness that delays or blocks access to effective care.
By supporting the CSF Leak Association, you are helping to change that.
With your support, we can shorten time to effective treatments, improve outcomes, and ensure no one faces a CSF leak alone.
👉 Donate now and be part of the change.
📨 Write to Your MP
Help put CSF leaks on the agenda. Write to your MP to raise awareness and call for better healthcare for CSF leak patients.
👉 Use our guide to get started
💡 Shine a Light on CSF Leaks
Would you love to see a landmark near you light up? Contact your local landmark and ask them to support our Shine a Light on CSF Leaks campaign.
👉Help Shine a Light on CSF Leaks
Below is a list of landmarks taking part. If a landmark near you is supporting CSF Leak week, and you’re able to visit (or have someone who can go on your behalf), we’d love to share your photos. These images help us show the world that the CSF leak community is here - united and deserving of better understanding and care. Send your photos to events@csfleak.uk and we’ll share them with the world. Alternatively post them on your social media with the hashtag: #csfleakweek
Landmarks Lighting up for Leak Week
Date Landmark
Scotland
3 June Marischal College, Aberdeen
3 June Camera Obscura, Edinburgh
2-4 June Ness Bridge
Wales
3 June National Library of Wales
England
2,3 June St. Edmundsbury Cathedral
3 June Mersey Gateway Bridge
1-7 June Brighton Palace Pier
3 June Alexandra Palace Mast
3 June Medway Maritime Hospital
3 June Rochester Cathedral
3 June Gateshead Millenium Bridge
3 June Wainhouse Tower
Ireland
3-5 June Casino Marino
3-5 June Collins Barracks
3-5 June Dept of Education, Marlborough St
3-5 June Enterprise Trade and Employment
3-5 June Farmleigh (Water Tower)
3-5 June Kilkenny Castle
3-5 June National Concert Hall
3-5 June National Museum
3-5 June National Library
3-5 June Phoenix Park Roundabout
3-5 June Rock of Cashel
3-5 June St Stephen Green – Wolfe Tone Monument
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