There are a number of resources that have proven helpful to other patients. The Foundation does not sponsor any of the following resources; we are only hoping to provide patients with the most information possible. If you have a resource you think should be included on this page, let us know!
Health and Wellness Resources
Between 130-260 people contract GBS from receiving a flu shot in America each year. The National Vaccine Injury Compensation Program was created to help patients who can link their GBS to a vaccination that they received. Check out a story about this on NPR.
The software that Stephen Hawking uses to speak via a synthesized voice on his computer has been released freely on the internet. All you need is a computer with Windows XP or higher and a webcam. This could be very helpful for patients unable to use their voice.
The Foundation also can provide you with communication cards, specially designed for use by GBS and CIDP patients in hospital settings. Contact firstname.lastname@example.org to obtain a copy.
Lotsa Helping Hands powers online caring Communities that help restore health and balance to caregivers’ lives. The free service brings together caregivers and volunteers through online Communities that organize daily life during times of medical crisis or caregiver exhaustion in neighborhoods and communities worldwide.
The Johns Hopkins Neurosurgery Medical Second Opinion Program provides timely second opinions (for a fee) on neurological conditions and neurosurgery from leading experts without requiring you to spend time and money on traveling.
Understanding Your Conditions
PolyNeuroExchange provides relevant and up-to-date information about the diagnosis and treatment of the various peripheral neuropathies. Recent relevant additions include:
- “Subcutaneous Immunoglobulin in Multifocal Motor Neuropathy,” Hans Katzberg, MD (slides)
- “Incidence of GBS and CIDP following influenza vaccination,” Peter Donofrio, MD (slides)
- “Dosing schedules for IVIG: The use of an algorithm as a suggestion for personalized dosing”, Dr. Michael Lunn, PhD (slides)
- “Subcutaneous Immunoglobulin: Feasibility and Safety in Neuromuscular Diseases, Zaeem Siddiqi, MD (poster)
- “Subcutaneous Immunoglobulin in responders to Intravenous Immunoglobulins with Chronic Inflammatory Demyelinating Polyradiculoneuropathy,” Nabil Moumane, MD (poster)
This article describes the therapeutic, pharmaceutical, cost, and administrative considerations behind choosing the right IG product for you. This is a great resource to check out if you receive IVIg regularly.
IG Living has informative resources that can help to solve the acute problems of availability, affordability and safety of IG products, as well as help in understanding how to manage a life with chronic illness. This website also features an Ask the Experts Q&A column as well as a Patient Advocate you can speak with about various issues.
Financial Assistance Resources
These programs provide co-payment assistance or free or discounted medicines to people who can’t afford them.
Some pharmaceutical companies offer assistance programs for the drugs they manufacture.
Helps patients who are struggling to keep up with expensive insurance premiums and co-payments. 1-800-366-7741
Helps patients pay their insurance co-pays so they can get access to medications. (877) 968-7233
Helps patients with access to care, maintenance of employment and preservation of their finances. (800) 532-5274
Helps patients who lack prescription coverage get the medicines they need.
Access to Benefits Coalition (Medicare beneficiaries only)
Extra help with the costs associated with coverage for people with limited incomes and resources.
Helps patients find an attorney for people appealing decisions about social security benefits. 1-800-431-2804
Provides a free drug discount card that offers a discount of up to 80% at more than 63,000 pharmacies nationwide. 1-800-503-6897
Provides financial support to patients who are critically or chronically ill and can’t afford their medications. 1-877-245-4412
A list of about 300 health care facilities nationwide obligated to provide free or reduced-cost care
Assists patients living with chronic diseases with copays, deductibles, and health insurance premiums. 800-675-8416
Helps patients handle disputes with their employer or private health plan, by state.
Helps patients who demonstrate financial hardship access specialty medications.
Offers a comprehensive database of pharmaceutical patient assistance programs, as well as practical tools, news, and articles.
Expertise’s guide aims to help make the federal grants available to seniors, veterans, and disabled people much easier to understand and take advantage of, particularly for remodeling homes for accessibility.