CSF Leak Association
Our objectives
Who We Support
We support people living with or suspected to have Cerebrospinal Fluid (CSF) leaks, along with their families and carers. These leaks can cause severe, disabling symptoms and are often misunderstood or misdiagnosed.
How We Help
We raise awareness among the public, healthcare professionals, and policymakers. We provide clear, reliable information and practical resources, campaign for better access to tests and treatments, and support research to improve diagnosis and care. We also offer guidance and community support for those affected.
Why Our Help Matters
CSF leaks can turn lives upside down—but they are treatable if correctly diagnosed. Sadly, many people suffer for years without answers, leading to unnecessary pain and complications. By improving understanding and access to care, we help people get the right diagnosis sooner, reduce suffering, and restore hope for recovery.
Our activities
Core Activities
- Raising Awareness
We work to increase understanding of Cerebrospinal Fluid (CSF) leaks among the public, healthcare professionals, and policymakers through campaigns, media engagement, and educational events. - Providing Information & Support
We offer reliable resources, practical advice, and community support for people affected by CSF leaks and their families, helping them navigate diagnosis and treatment. - Advocacy & Policy Change
We campaign for better access to diagnostic tests and treatments, and for improvements in clinical pathways within the NHS and beyond. Continuing our work as a stakeholder with NICE. - Education & Training
We deliver educational materials and collaborate with medical professionals to improve recognition and management of CSF leaks. - Research & Collaboration
We encourage and support research into the causes, symptoms, diagnosis, and treatment of CSF leaks, and work with healthcare providers and other organisations to advance knowledge and care.