In addition to the Conquer MG website, you can find useful information about myasthenia gravis from the sources listed here.
For example, check the Muscular Dystrophy Association (MDA) site for free clinics, the Mayo Clinic site for disease information, and the NIH/National Institute of Neurological Disorders and Stroke for updates on MG research.
Please keep in mind that internet sites are always changing. The following web sites do not represent an endorsement by Conquer MG. The compilation of links should not be considered a complete listing of all available links for any topic. Conquer Myasthenia Gravis assumes no liability of any kind for the content on the sites.
MG and Autoimmune Disease Informational Links
Local MG Organizations
Here are organizations that provide myasthenia gravis patients with local services and support:
- Myasthenia Gravis Foundation of California (323) 887-0056
- Myasthenia Gravis Association of Western Pennsylvania (412) 566-1545
- Myasthenia Gravis Association (serving Kansas and Missouri) (816)256-4100
- Myasthenia Gravis Association (serving Detroit and surrounding area) (248) 591-4419
- Support groups in various states including the Carolinas, Florida, Louisiana, and Texas listed by MGFA
General and Prescription Assistance
- Rx Hope http://www.rxhope.com (800.511.2120) offers a helping hand to people in need when it comes to obtaining critical medications they normally would have trouble affording.
- Rx Assist http://www.rxassist.org is a resource center with information about patient assistance programs, Medicare Part D, programs for low cost medications and any other issues related to pharmaceutical access. The Novartis Patient Assistant Program is administered through Rx Assist.
- NeedyMeds http://www.needymeds.com is a non-profit with the mission of helping people who cannot afford medicine or healthcare costs. The information at NeedyMeds is available anonymously and free of charge.
- Partnership for Prescription Assistance (888.477.2669) brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through a public or private program.
- Genentech® Access to Care Foundation (888.754.7651) offers help with CellCept® (mycophenolate mofetil) for MG patients who meet specific insurance, financial, and medical criteria.
- Novartis Patient Assistance Program (800.245.5356) offers help with Novartis products such as Neoral® and Sandimmune® (cyclosporine). The patient and the patient’s doctor must complete the application form.
- Valeant Pharmaceuticals Patient Assistance Program: The patient and the patient’s doctor must complete the application form which can be obtained by calling (866.268.7325). Patients can receive certain medications including Mestinon® Timespan (time release pyridostigmine) and Mestinon® Syrup (pyridostigmine syrup) if they do not qualify for Medicaid or other programs. Regular 60mg Mestinon tablets are not part of this program.
- Benefits Check Up is a service of the National Council on Aging that helps people in need find public programs and learn how to apply for them.
Free or Low Cost Clinics
- The US Department of Health and Human Services, Health Resource and Services Administration offers a service for finding low cost health clinics. Federally-funded health centers care for you, even if you have no health insurance. You pay what you can afford, based on your income. Health centers are in most cities and many rural areas.
- MDA maintains a network of 200 specialized clinics across the United States and in Puerto Rico. Most MDA clinics are located in teaching hospitals, and many MDA clinic directors are university medical school professors as well as practicing physicians. Local MDA staff can direct you to the closest MDA clinic, or you can find a local MDA clinic online at mda.org/locate, or by calling (800) 572-1717.
- A website that lists free or nearly free health clinics by state. The site is updated by the developers and users.
Under the Affordable Care Act, individuals and families—including people with special health care needs and pre-existing conditions, low-income childless adults, seniors, young adults and self-employed individuals— have access to affordable, quality coverage.
Residents of many states, including Illinois, Indiana and Iowa, can use the Health Insurance Marketplace to get coverage that meets their needs and fits their budget. Annual open enrollment for the coming year begins October 1. To use the Marketplace, visit https://www.healthcare.gov.
Two Illinois programs of special interest
- All Kids is Illinois’ program for children who need comprehensive, affordable health insurance, regardless of family income, immigration status or health condition.
- FamilyCare offers healthcare coverage to parents living with their children 18 years old or younger. Eligibility is based on income. Coverage is like that provided under Illinois’ All Kids program.
- The official U.S. Government website for people on or enrolling in Medicare.
- Medicare Rights Center (MRC) is an independent source of health care information and assistance in the United States for people with Medicare. MRC helps older adults and people with disabilities get good, affordable health care.
- The official website of the U.S. Social Security Administration.
- The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities.
- The Ticket to Work and Self-Sufficiency Program is an employment program for people with disabilities who are interested in going to work. The Ticket Program is part of the Ticket to Work and Work Incentives Improvement Act of 1999 – legislation designed to remove many of the barriers that previously influenced people’s decisions about going to work because of the concerns over losing health care coverage. Learn more by clicking here.
- Job Accommodation Network is a free consulting service designed to increase the employability of people with disabilities by:
- Providing individualized worksite accommodation solutions
- Providing technical assistance regarding the ADA (Americans with Disabilities Act) and other disability related legislation
- Educating callers about self-employment options
Medical ID Jewelry and Services
Here are two services that provide medical ID jewelry.
- MedicAlert® 800-ID-ALERT (800.432.5378) – This nonprofit healthcare organization sells engraved jewelry indicating your medical condition and offers a service that emergency responders can call for complete medical information you provide. MedicAlert also offers products for summoning emergency aid.
- American Medical ID (1-800-363-5985) – American Medical ID currently sells over 100 different medical jewelry products from stainless steel to gold. American Medical ID medical jewelry includes free engraving services to ensure all patients are able to communicate their medical condition to all health care professionals in emergency situations. American Medical ID has a sister alert system, One Call Alert. One Call Alert provides emergency medical care at the push of a button.
MG-related vision problems can make it difficult to read, and sometimes to even get around. These services might help:
- National Library Service for the Blind and Physically Handicapped—Talking Book Center books and magazines on tape. Books, playback equipment, headphones and other aids are delivered by mail, postage free, to your home. Thousands of titles are available.
- Bureau of Blind Services, Illinois Department of Human Services has programs which help individuals adjust to vision loss. You can call 800.843.6154 (TTY: 800.447.6404) to learn about the department’s services and office locations.
Discounted transportation may be available if you become disabled. For instance, some communities or counties offer reduced-fare taxi programs. In the Chicago area, RTA/Pace/Metra provides discounted travel within the six-county region that the RTA services. Contact your local government to see if you qualify for such a program.
Information on this page updated June 2016.