Helpful Links
GBS/CIDP Foundation International
www.gbs-cidp.org
The GBS/CIDP Foundation International is the only voluntary, nonprofit organization that provides support to patients of GBS/CIDP and their families, awards grants to researchers and offers education to the public and professional communities.
The Foundation for Peripheral Neuropathy
www.foundationforpn.org
The Foundation for Peripheral Neuropathy is a public charity foundation committed to fostering collaboration among today’s most gifted and dedicated neuroscientists and physicians. These specialists from around the country will help us maintain a comprehensive view of the field and determine the research areas that hold the most promise in neuropathy research and treatment to develop new and effective therapies that can reverse, reduce and one day eliminate Peripheral Neuropathy. It is our ultimate goal to utilize every means and opportunity to dramatically improve the lives of those living with this painful and debilitating disorder.
National Institute of Neurological Disorders and Stroke
www.ninds.nih.gov
The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.
The UCSF Neuropathy Center
www.ucsfhealth.org/adult/special/n/53904.html
Coordinates education, support and outreach programs for patients suffering from peripheral neuropathy, a disease caused by damage to the peripheral nerves.
The National Institutes of Health (NIH)
www.nih.gov
Part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research. Helping to lead the way toward important medical discoveries that improve people’s health and save lives, NIH investigates ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases.
ClinicalTrials.gov
www.clinicaltrials.gov/ct
Provides regularly updated information about federally and privately supported clinical research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. The information provided on ClinicalTrials.gov should be used in conjunction with advice from health care professionals.
The National Organization for Rare Disorders (NORD)
www.rarediseases.org
NORD is a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
American Chronic Pain Association (ACPA)
www.theacpa.org
The ACPA was founded in 1980 to provide resources for people coping with chronic pain.
The National Committee for Quality Assurance (NCQA)
www.ncqa.org
The NCQA provides free access to detailed report cards on health plans, clinical performance, member satisfaction, access to care and overall quality on its Health Plan Report Cards online.
Power of Pain Foundation (POPF)
The Power of Pain Foundation’s mission is to educate and show support for Chronic Pain Patients, specifically those with Neuropathy Pain conditions including diabetic neuropathy, lyme disease, neuro-muscular diseases, neuro-autoimmune diseases, and post cancer pain.Patient Advocate Foundation (PAF)
www.patientadvocate.org
The PAF seeks to assure patient access to care, maintenance of employment and financial stability.
PolyNeuro Exchange
http://www.polyneuroexchange.com
Provides up-to-date and current information on symptoms, diagnosis, and treatment options for peripheral neuropathies. Video and audio presentations provide insights from experts in the field of inflammatory neuropathies and related sciences focusing on MMN, CIDP and GBS. Newer content to the site includes:
· Electrophysiologic Findings in Multifocal Motor Neuropathy (Jonathan S. Katz, MD)
Explore electophysiologic findings of MMN in addition to the classical electrophysiological conduction block.
· Global Multifocal Motor Neuropathy Quality of Life Patient Survey Identifies Needs in Education and Treatment (Jonathan S. Katz, MD)
Examine a quality of life patient study that identifies needs in education and treatment for patients with MMN.
· CIDP Assessment Tools: INCAT (Dr. Jeffery A. Allen)
Learn about the INCAT scores and variations of them used to evaluate outcome measures for immune-mediated neuropathies.
· CIDP Assessment Tools: Grip Strength (Dr. Jeffery A. Allen)
Listen to a discussion about tools that are commonly used to measure grip strength in CIDP.
· CIDP Assessment Tools: Rasch Overall Disability Score (Dr. Jeffery A. Allen)
Hear a brief description of the Rasch version of the Overall Disability Score used in CIDP diagnosis and treatment.
· CIDP Assessment Tools: Medical Research Council Sum Score (Dr. Jeffery A. Allen)
Understand how the Medical Research Council (MRC) Sum Score can be used for evaluating muscle strength in CIDP.
· Fatigue in CIDP (Karissa Gable, MD)
Engage in a presentation on the comparison between active and remission disease states in CIDP.
DisabilityGuidance.org
www.DisabilityGuidance.org
At DisabilityGuidance.org, they understand the struggles that come with being disabled. Not only can your condition make working difficult or even impossible; the road to securing the benefits you have earned is often a long and confusing process. DisabilityGuidance.org’s goal is to continue serving as the internet’s most comprehensive resource for SSDI and SSI assistance. No matter which stage you are in, DisabilityGuidance.org is there every step of the way to provide you with the resources you will need to progress in your disability benefits journey.
Western Neuropathy Association (WNA)
www.pnhelp.org
The Western Neuropathy Association (WNA) is a California non-profit, tax-exempt corporation which promotes the organization of local support groups for people with peripheral neuropathy (PN) and those who care for them. Our primary goal is to establish support groups in every population center in California, Nevada, and Oregon and possibly Hawaii. A listing of support groups is as follows:
Houston TX Peripheral Neuropathy Support Group (1st Saturday in each quarter)
Host – Katherine Stenzel and John Phillips
Auburn CA Peripheral Neuropathy Support Group (1st Monday each month)
Monday, 12 noon - 1:30pm Pacific Beecher Room at the Auburn Library, 350 Nevada St., Auburn, CA
Host – Pam Hart, pamula1@hotmail.com, and Cass Capel, capelkbphd@gmail.com
1st Wednesday Strategies for Singles with Neuropathy Support Group (every other month)
Wednesday, 4pm – 5pm Pacific / 6pm – 7pm Central / 7pm – 8pm Eastern
Host – Erika McDannell, contact Erika for Zoom link, ejmcdannell@pnhelp.org
2nd Saturday Peripheral Neuropathy Support Group
Saturday, 11am - 1pm Pacific / 1pm - 3pm Central / 2pm - 4pm Eastern
Meeting ID: 856 7106 1474, Passcode: 114963
Host - Katherine Stenzel, contact Katherine for Zoom link, klstenzel@hotmail.com
2nd Wednesday Chemo-Induced Peripheral Neuropathy (CIPN) Support Group
Wednesday, 2pm - 3pm Pacific / 4pm - 5pm Central / 5pm - 6pm Eastern
Meeting ID: 830 5538 3243, Passcode: 396320
Host - Glenn Ribotsky, contact Katherine for Zoom link, klstenzel@hotmail.com
Santa Cruz CA In-Person Peripheral Neuropathy Support Group
Wednesday, 1pm – 2:30 pm Pacific Trinity Presbyterian Church, 420 Melrose Avenue, Santa Cruz, CA Host - Mary Ann Leer (831) 477-1239
3rd Wednesday Peripheral Neuropathy Support Group
Wednesday, 10am - Noon Pacific / Noon - 2pm Central / 1pm - 3pm Eastern
Meeting ID: 833 4473 0364 / Passcode: 341654
Host - Glenn Ribotsky, contact Katherine for Zoom link, klstenzel@hotmail.com
3rd Wednesday CIDP and Autoimmune Support Group
Wednesday, 3pm - 4pm Pacific / 5pm - 6pm Central / 6pm - 7pm Eastern
Host - John Phillips, contact John for Zoom link, johnphillips@pnhelp.org
4th Saturday Peripheral Neuropathy Open Discussion
Saturday, 11am -1pm Pacific / 1pm - 3pm Central / 2pm - 4pm Eastern
Meeting ID: 851 7949 9276 / Passcode: 159827
Host - John Phillips, contact Katherine for Zoom link, klstenzel@hotmail.com
