Helpful Links
The Northern California Chapter of The Neuropathy Association (NCCNA)
www.pnhelp.org
The Northern CA Chapter Of The Neuropathy Association (NCCNA) 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 Northern California and Nevada.
The Neuropathy Association
www.neuropathy.org
The Neuropathy Association® is a public, charitable, nonprofit organization that was established in 1995 by people with neuropathy and their families or friends to help those who suffer from disorders that affect the peripheral nerves. We are fast approaching a membership of 100,000, and we have more than 250 support groups throughout the United Stated serving patients.
The Foundation for Peripheral Neuropathy
www.foundationforpn.org
The Foundation for Peripheral Neuropathy is a private foundation committed to fostering collaboration among today’s most gifted neuroscientists and physicians who are dedicated to neuropathy research and treatment to develop new and effective therapies that can reverse, reduce and on day find a cure for Peripheral Neuropathy. It is our ultimate goal to utilize every means and opportunities to dramatically improve the lives of those living with this debilitating disease.
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.
California State Department of Managed Health Care (DMHC)
www.dmhc.ca.gov
The DMHC regulates all HMOs and some PPOs in California. DMHC is here to explain your health care rights and help you understand how to use your health care benefits.
Patient Advocate Foundation (PAF)
www.patientadvocate.org
The PAF seeks to assure patient access to care, maintenance of employment and financial stability.
Patient Services Incorporated (PSI)
www.uneedpsi.org
The nonprofit PSI specializes in health insurance premium, pharmacy co-payment and co-payment waiver assistance for people with chronic illnesses.
NuFactor
www.nufactor.com and www.igliving.com
NuFACTOR’s specialized homecare services provide support for immune globulin therapy in the comfort of patients’ home, school or office. NuFACTOR, along with its parent company FFF Enterprises, publishes IG Living, a free-subscription magazine for the immune globulin community.
GBS/CIDP Foundation International
www.gbsfi.com
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.
Alliance for Plasma Therapies
www.plasmaalliance.org
The Alliance for Plasma Therapies is national 501 (c)(3) nonprofit organization established to provide a unified, powerful voice of patient organizations and healthcare providers to advocate for fair access to plasma therapies. The Neuropathy Action Foundation is a board member.
Dying for Help
www.dyingforhelp.com
Dying for Help is a feature length documentary chronicling the battles facing patients with rare diseases, who must fight for the life saving therapies they desperately need. Please visit the website www.dyingforhelp.com to watch the trailer and learn more about this important project. If you use IVIG and would like to participate, visit the Voices and Faces of IVIG page and forward your pictures and stories to be posted on this site to mvogel@plasmaalliance.org. The goal of this documentary is to educate the public about these rare diseases; the medical community about the importance of early detection; the policymakers about how healthcare legislation can impact the coverage of lifesaving therapies for patients; and the insurance companies about the patients who rely on IVIG, how IVIG treats so many diseases successfully, and without adequate and affordable coverage for lifesaving therapies, patients will succumb needlessly to diseases that are treatable.
