Other Charities & Support

We’ve pulled together a selection of other charities, medical centres and support groups that we think may be of use to anyone interested in CSF Leaks and Intracranial Hypotension.

They’re not our webpages, so we don’t control the content and including a link does not mean that we automatically agree with any or all opinions expressed on the associated website.

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Charities (Elsewhere)

• Spinal CSF Leak Canada A charity for spinal CSF leaks established in 2019

• Spinal CSF Leak Foundation The USA’s spinal CSF leak charity.

Charities (UK & Ireland)

• Aspire – Supporting people with spinal injury

• Brain and Spine Foundation

• CSF Leak Association

• Headway

• IIH UK / Idiopathic Intracranial Hypertension UK

Counselling & Support

• Breathing Space Scotland

• Samaritans

CSF Leak / Intracranial Hypotension Resources

• Cedars-Sinai Medical Center CSF Leak Pages

• Cerebrospinal Fluid Information

• Claire Hubbard's Blog – My life with Intracranial Hypotension

• CSF Leak Association

• Educational Presentation: Intracranial Hypotension

• Johns Hopkins Medicine – What are CSF Leaks?

• Medicine Plus – What is a CSF Leak?

• Mont Sinai Hospital – CSF Leak

• Spinal Headache – Information Resource for CSF Leak Headaches

• The Management of Cranial and Spinal CSF Leaks

CSF Leak Organisations

• CSF Leak Association

• Spinal CSF Leak Foundation

Doctors with CSF Leak Experience (UK & Ireland)

• Click here to use our search tool.

Doctors with CSF Leak Experience (USA)

• Dr Ian Carroll

• Dr Linda Gray-Leithe

• Dr Wouter I. Schievink

Medical Journals & Research

• Barrow Neurological Institute

• British Medical Journal

• Cerebrospinal Fluid Leak Imaging

• Chiari Malformation & Syringomyelia Foundation Research

• High-Resolution Single-Slice MR Myelography

• Journal of American Medical Association (JAMA)

• National Library of Medicine

Miscellaneous

• British Society of Neuroradiologists

• Headache Specialists in the UK

• Health Improvement Scotland – Stepped care for functional neurological symptoms

• NHS Choices

• Scottish Head Injury Forum

• The Neurological Alliance of Scotland

Online Communities for CSF Leak / Intracranial Hypotension

• Canadian CSF Leak Support Group

• CSF Leaks (Cerebrospinal Fluid Leak) & IH – Facebook Open Group

• CSF Leaks (Cerebrospinal Fluid Leak) & IH – Facebook Private Group

• CSF Leaks (UK & Others) – Facebook Open Group

• Inspire Spinal CSF Leak Community

• Liquorverlust (German Language Site) German language site run by patients.

Related Medical Conditions & Resources

• Arnold Chiari Malformation

• Brain and Spine Foundation

• Cerebrospinal fluid rhinorrhoea

• Connective Tissue Disease

• CSF Flow Issues

• Ehlers Danlos Syndrome

• Hypermobility

• I Have IIH Foundation

• IIH UK / Idiopathic Intracranial Hypertension UK

• Intercranial Hypertension Research Foundation

• Marfan Syndrome

• Meningitis

• Shine Charity (IHH)

• Syringomyelia

Therapies & Relaxation for Leakers

• Craniosacral Therapy Association (UK)

• The Shiatsu Society (UK)

UK NHS Hospitals (with CSF Leak Experience)

• Aberdeen Royal Infirmary

• National Hospital for Neurology and Neurosurgery, London

• Salford Royal Hospital, Manchester

• Southern General Hospital, Glasgow

• The Walton Centre, Liverpool

• University Hospital of North Staffordshire

USA Hospitals (with CSF Leak Experience)

• Cedars-Sinai, California

• Duke Medicine, North Carolina

• Stanford University, CA

Last reviewed: 2021