Neuropathy Commons

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Patient Support Resources

Nonprofit organizations focused on neuropathy

Foundation for Peripheral Neuropathy
485 Half Day Road, Suite 350, Buffalo Grove, IL 60089
(877) 883-9942

Neuropathy Support Network
Click here for free DVD “Coping with Chronic Neuropathy”
Very extensive website with much information and links to further neuropathy-related resources.

Neuropathy Action Foundation
Excellent website

Minnesota Neuropathy Association
(952) 941-5372

Neuropathy Alliance of Texas
P.O. Box 40874, Austin, TX 78704
(512) 553-9130
Email: info@neuropathyalliancetx.org

The Western Neuropathy Association (WNA)
PO Box 276567, Sacramento, CA 95827
(877) 622-6298
Email: info@pnhelp.cog
For patients in California, Nevada or Oregon

Charcot-Marie-Tooth Association
P.O. Box 105, Glenolden, PA 19036
800-606-2682
Email: info@cmtausa.org

Deater Foundation
Email: Incinfo@cmtausa.org
The Deater Foundation raises awareness and support for HSAN1, a type of hereditary neuropathy.

Dysautonomia International
67 Woodlawn Ave, East Moriches, NY 11940
Email: info@dysautonomiainternational.org

Dysautonomia Youth Network of America
1301 Greengate Court, Waldorf, MD 20601

The Erythromelalgia Association
200 Old Castle Lane, Wallingford, PA 19086
(610) 566-0797
Email: memberservices@burningfeet.org 

GBS/CIDP Foundation International
104½ Forrest Ave, Narberth, PA 19072
(610) 667-0131

Hereditary Neuropathy Foundation, Inc
432 Park Avenue South, 4th Floor, New York, NY 10128
855-HELPCMT (435-7268) or 212-722-8396
Email: info@hnf-cure.org

Sjӧgren’s Syndrome Foundation
6707 Democracy Blvd, Suite 325, Bethesda, MD 20817
(800) 475-6473
Extensive website with many resources

American Chronic Pain Association (ACPA)
P.O. Box 850, Rocklin, CA 95677-0850
(916) 632-0922 or 800-533-3231
Email: ACPA@theacpa.org

International Pain Foundation/Power of Pain
38556 North Dave Street, Santan Valley, AZ 85140
Mission is to support patients, raise awareness and promote research on neuropathy-related pain

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue, Danbury, CT 06810
Tel: 203-744-0100, Voice Mail: 800-999-NORD (6673)
Email: orphan@rarediseases.org

Caregiver Action Network (formerly National Family Caregiver Association)
1130 Connecticut Avenue NW, Suite 500, Washington, DC 20036
(202) 454-3970
Email: info@caregiveraction.org

Patient Advocate Foundation
421 Butler Farm Road, Hampton, VA 23666
800-532-5274
Email: help@patientadvocate.org

 

Support Group Contact Information

Neuropathy Support Network: List of Support Groups

Foundation for Peripheral Neuropathy: Support Group List

Minnesota Neuropathy Association  
(952) 941-5372

Neuropathy Alliance of Texas
P.O. Box 40874, Austin, TX 78704
(512) 553-9130
Email: info@neuropathyalliancetx.org

The Western Neuropathy Association (WNA)
PO Box 276567, Sacramento, CA 95827
(877) 622-6298
Email: info@pnhelp.cog
For patients in California, Nevada or Oregon

 

U.S. Government Organizations and Agencies

National Institute of Neurological Diseases and Stroke (NINDS)

Links to many governmental agencies on NINDS website
NINDS pages on types of neuropathy and related disorders:

 

Information for neuropathy patients from noncommercial websites

American Cancer Society: Information about chemotherapy-induced neuropathy

IG Living
A free magazine, both online and print, dedicated to supporting patients with neuropathy and other chronic illnesses who are treated with immune globulin, also called IVIG or SCIG. The site has information on many topics, including getting insurance coverage for IVIG.

Liza Jane's Charts 
A spreadsheet from a peripheral neuropathy patient listing almost every test used to investigate neural conditions. Lets patient track test results over time

Neurology Now
A magazine on neuropathy and other neurological conditions from the American Academy of Neurology, free for patients
Subscribe

Neurotalk 
An excellent discussion board for all things neurological, especially peripheral neuropathy. It includes extensive set of databases and links to many articles

Neuropathy Diagnosis
The diagnostics entry point for the peripheral neuropathy section of the huge neuromuscular conditions database at Washington University of St. Louis’ medical website. Primarily for professionals; very comprehensive.

The Neuropathy Journal
Online publication with many neuropathy-related articles, provided by the Neuropathy Support Network

RELIEF News 
News about pain research for patients and the general public

 

Articles on Neuropathy Topics

An Algorithm for the Evaluation of Peripheral Neuropathy
An article on evaluating peripheral neuropathy. Excellent flow charts

American Academy of Neurology Fact Sheet on Distal Symmetric Polyneuropathy

Diabetic Autonomic Neuropathy 
This is an article on autonomic peripheral neuropathy by Dr. Aaron Vinik. It is about diabetic autonomic neuropathy and the material is relevant to autonomic neuropathy from other causes

Multiple Studies, One Conclusion: Some Fibromyalgia Patients Show Peripheral Nerve Pathologies
Article by Stephani Sutherland, courtesy of Pain Research Forum

 

Clinical Trial Information

CenterWatch
10 Winthrop Square, Fifth Floor, Boston, MA 02110
(617) 948-5100
Excellent site for finding clinical trials of interest in your area, as well as learning about clinical trials and participating in them

ClinicalTrials.gov
ClinicalTrials.gov is a service of the U.S. National Institutes of Health, and is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.