CSF Leak Association - The Cerebrospinal Fluid Leak Charity

09/06/2026

📢 New research update for CSF leak patients

A new study in the American Journal of Neuroradiology (May 2026), led by Dr. Andrew Callen and colleagues, looked at 44 patients with suspected CSF leaks that couldn’t be located on imaging.

🔹 Researchers explored spinal compliance (how the spinal CSF space responds to pressure) as a possible marker
🔹 Patients with higher spinal compliance were more likely to benefit from an epidural blood patch

💡this may offer a new way to predict who might respond to treatment and support better care decisions.

📖 https://doi.org/10.3174/ajnr.A9432

08/06/2026

08/06/2026

💙 Thank you for being part of Leak Week 2026

As we come to the end of this week, we just want to extend our heartfelt thanks to every single person who has been part of it.

To those who shared their stories, helped raise awareness, supported a loved one, or simply took the time to learn, you have made a real and lasting difference.

We have been honoured to work alongside our incredible sister charities —
Spinal CSF Leak Foundation Spinal CSF Leak Canada Spinal CSF Leak Australia Asociación AHIFUGA

This global collaboration has made this year’s Leak Week truly special, and a remarkable success. Together, we are amplifying voices, increasing understanding, and driving real change.

This community is powerful and together, we are being heard 💙

If you’d like to support our ongoing work and help us to continue making a difference, you can donate here:
👉 https://csfleak.uk/donate

💙No one should have to face this alone.

08/06/2026

💙 Thank you — from all of us. 💙

This week, five patient-led organisations across three continents united with one shared purpose: to raise awareness, amplify patient voices, and move toward earlier diagnosis, better care, and improved outcomes for everyone affected by CSF leak.

To every patient, caregiver, clinician, researcher, volunteer, supporter, and advocate who shared, learned, donated, or helped spread the word this week — thank you. 🙏 None of it happens without you.

But awareness doesn't end here. Every conversation, every story, every new connection helps bring this often-invisible condition into the light. Together, we're building momentum and shaping a better future for CSF leak patients worldwide.

If you're able, please consider supporting the work of our volunteer-run charities as we continue to push for earlier diagnosis, better care, and improved prognosis worldwide. 💙

What began as three organisations is now five — and our collective voice only grows stronger from here. Thank you for being part of it.

🔗 Support our work and help us keep going: https://csfleak.uk/donate-now

07/06/2026

Next up is Abena Yeboah, Glasgow Caledonian University. In 2024 we funded this research which is looking at Tear fluid protein as a potential non invasive marker for IIH.

07/06/2026

💙 Day 7: The evidence is clear — and the momentum is real. 💙

As we close out CSF Leak Awareness Week 2026, we're turning to the research — because the science is finally catching up with what patients have known all along.

Recent studies confirm just how profoundly a CSF leak affects everyday life. A 2026 German study found that after symptom onset, 96% of working-age patients could no longer work as they had before. A study from Australia and New Zealand summed up the lived experience perfectly in its very title: "Getting to diagnosis was an absolute nightmare." And a 2026 Mayo Clinic study found patients underwent an average of six imaging studies before diagnosis, with three in four initially misdiagnosed and a quarter left undiagnosed for five years or more.

But there's real hope here too. 🔬 Research into CSF leak has grown almost 100-fold since the very first paper in 1938 — surpassing 1,000 publications in 2025 alone. In 2025, experts published landmark consensus guidelines on diagnostic imaging. Patient registries are now broadening our knowledge across Canada, the United States, and Germany. International conferences keep bringing experts and patients together. And this year's campaign is proof of that momentum in itself — growing from three organisations to five, spanning three continents.

Swipe through for the data behind the progress, and the full list of references. 👉

Thank you for following along this week, for sharing, and for helping us raise our collective voice. Progress is accelerating, collaboration is expanding, and together we're moving closer to a future of earlier diagnosis and better outcomes — because no one should face a leak alone. 💙

🔗 Find out more about Leak Week 2026: https://csfleak.uk/awareness/leak-week-2026

07/06/2026

💙 This is why awareness matters.

💙 Leak Week may be ending—but this is not the end.

This week, we’ve shared stories of strength, struggle, and hope.

We’ve heard from people who waited years for answers and those whose lives changed when they finally got them.

We’ve seen the impact of being unheard. And the power of finally being believed.

💙 CSF leaks can mimic other conditions.

Awareness changes outcomes and with the right diagnosis, lives can change.

Together, we are building a future where:

✨ Patients are recognised sooner
✨ Clinicians understand the condition
✨ No one is left to struggle alone

👉 You can help us continue this work:

💙 Share this post
💙 Follow and raise awareness
💙 Donate if you’re able

Because no one should have to fight this hard to be heard.