The following websites are helpful in preparing information ahead of medical appointments:

The American Spinal CSF Leak Foundation

The CSF Leak Association

National Organization of Rare Disorders

Canadian Headache Society

Migraine Canada

Intracranial Hypertension

Ehlers-Danlos Society

The ILC Foundation

The following social media sites offer information and a forum for those suffering from the debilitating symptoms of a spinal CSF leak:

CSF Leaks and Headaches for Canadians initiated by Betty-Lu Edwards and her team:

The following are some motivational websites: