Helpful links
Here are some links for further information on spinal CSF leak and associated conditions, including links to headache organizations, other spinal CSF leak–focused foundations and organizations, organizations for associated conditions, genetic and rare disease organizations, help for patients, and help for caregivers.
Headache Organizations
Alliance for Headache Disorders Advocacy
allianceforheadacheadvocacy.org
American Headache Society
americanheadachesociety.org
American Migraine Foundation
americanmigrainefoundation.org
Coalition for Headache and Migraine Patients
headachemigraine.org
International Headache Society
ihs-headache.org
National Headache Foundation
headaches.org
Other Spinal CSF Leak Organizations and Foundations
CSF Leak Association (UK)
csfleak.info
Spinal CSF Leak Canada
spinalcsfleakcanada.ca
Tyrrell Foundation, a donor-advised fund of the DuPage Foundation
tyrrellfoundation.org
Help for Patients
Inspire Spinal CSF Leak Community
The Spinal CSF Leak Foundation Inspire Support Community connects patients, loved ones, and caregivers affected by spinal cerebrospinal fluid (CSF) leaks for informational and social support.
NORD Patient Assistance Program
Links and resources for patients and families looking for medication assistance and financial information.
Patient Advocate Foundation
Providing patient services, including financial support and case management assistance, so as to eliminate obstacles in accessing quality healthcare.
Patient Helpline
A program to help navigate the healthcare system and connect patients with free or reduced-cost services.
Help for Caregivers
The National Alliance for Caregiving
Offering resources, information, and support for caregivers.
Rare Caregiver Respite Program from NORD
This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder.
Caregiver Support from USA.gov
Offering federal, state, and local resources for caregivers.
Organizations for Associated Conditions
Dysautonomia International
POTS (Postural Orthostatic Tachycardia Syndrome), a type of dysautonomia, may co-exist in a spinal CSF leak patient or be an alternate diagnosis.
Ehlers-Danlos Society
Ehlers-Danlos Syndrome is one of the underlying heritable disorders of connective tissue associated with spontaneous spinal CSF leaks.
Intracranial Hypertension Research Foundation
Following procedures to treat spinal CSF leaks, rebound intracranial hypertension may occur.
Bobby Jones Chiari & Syringomyelia Foundation
Spinal CSF leak can result in low-lying cerebellar tonsils (Chiari mimic) and Syringomyelia
Loeys-Dietz Syndrome Foundation
Loeys-Dietz Syndrome is one of the heritable disorders of connective tissue associated with spontaneous spinal CSF leaks.
Marfan Foundation
Marfan Syndrome is one of the underlying heritable disorders of connective tissue associated with spontaneous spinal CSF leaks.
Polycystic Kidney Disease Foundation
Polycystic Kidney Disease is associated with spontaneous spinal CSF leaks.
John Ritter Foundation
Thoracic aortic aneurysms are associated with spontaneous spinal CSF leaks.
Tarlov Cyst Disease Foundation
A Tarlov cyst is a cerebrospinal fluid-filled nerve root cyst found most commonly at the sacral level of the spine. A ruptured cyst may be the site of a spinal CSF leak.
Genetic and Rare Disease Organizations
Global Genes
globalgenes.org
National Organization of Rare Disorders
rarediseases.org
Mental Health Support
National Suicide and Crisis Hotline
Dial 988 to connect with trained counselors.
Crisis Text Line
Text HOME to 741741 to connect with a crisis counselor
The National Alliance on Mental Illness Helpline
1-800-950-NAMI (6264) is open Monday through Friday, 10am–10pm EST. You can also email info@nami.org for support
Find a Therapist
via the Anxiety and Depression Society of America
Chronic Illness and Mental Health: Recognizing and Treating Depression
via the National Institute of Mental Health