Comprehensive Directory of Support Organizations for Patients and Families
Support groups and patient communities provide invaluable resources for people living with neurological conditions. These organizations offer peer support, educational materials, practical advice, and connections to others facing similar challenges. This directory covers the major support organizations for conditions evaluated with neurodiagnostic testing.
Website: www.epilepsy.com
Phone: 1-800-EPI-1223
About: The nation's leading voluntary health organization dedicated to the mission of stopping seizures, saving lives, and shattering stigma.
Resources & Services:
Website: www.aesnet.org
About: Professional and patient organization promoting research and education about epilepsy.
Resources & Services:
Website: www.epilepsy.com/get-support
About: Online community hosted by Epilepsy Foundation connecting patients and caregivers.
Resources & Services:
Website: www.narcolepsy.net
Phone: 1-888-292-6522
About: Patient-led organization supporting people with narcolepsy and other sleep disorders.
Resources & Services:
Website: www.sleepeducation.org
About: Patient education resources from the American Academy of Sleep Medicine.
Resources & Services:
Website: www.rls.org
Phone: 1-877-4-RLS-USA
About: Organization dedicated to improving quality of life for people with restless legs syndrome.
Resources & Services:
Website: www.sleepapnea.org
Phone: 1-202-293-3650
About: Patient-led organization improving awareness, education, and support for sleep apnea.
Resources & Services:
Website: www.als.org
Phone: 1-800-782-4747
About: Leading ALS research and care organization supporting patients and families.
Resources & Services:
Website: www.mndassociation.org (UK-based, serves international community)
About: International organization supporting people with motor neurone disease.
Resources & Services:
Website: www.neuropathyassociation.org
Phone: 1-888-4PN-HOPE
About: Organization dedicated to patient advocacy, education, and research for neuropathy.
Resources & Services:
Website: www.diabetes.org
Phone: 1-800-DIABETES
About: Leading organization for diabetes management including diabetic neuropathy support.
Resources & Services:
Website: www.myasthenia.org
Phone: 1-800-541-5454
About: Leading organization supporting people with myasthenia gravis.
Resources & Services:
Website: www.myasthenia.org/get-support
About: Online community hosted by MGFA connecting patients and families.
Resources & Services:
Website: www.nationalmssociety.org
Phone: 1-800-344-4867
About: Organization supporting people with MS and their families.
Resources & Services:
Website: www.apdaparkinson.org
Phone: 1-800-223-2732
About: Organization providing support and resources for Parkinson's disease.
Resources & Services:
Website: www.stroke.org
Phone: 1-888-4STROKE
About: Leading organization for stroke prevention and recovery support.
Resources & Services:
Support groups provide numerous benefits for patients and families:
If you're newly diagnosed or struggling, reaching out to a support group can be a positive first step. Whether online or in-person, these communities are ready to welcome you and provide the support you need.
This article is educational information only and does not constitute medical advice. The information here is based on current medical literature and professional standards but is not a substitute for professional medical evaluation, diagnosis, or treatment. Always consult with your healthcare provider regarding your specific medical situation, symptoms, and questions about sleep studies or any medical procedure.