You Can Never Have Enough Information
You know all that great advice from your doctor? Why stop there? We have gathered additional resources to give you more of what you need to take better care of yourself.
The more information you have available, the easier it is to become knowledgeable. This knowledge can empower you to make informed decisions while navigating the complex and often complicated waters that come along with the disorders.
This is always a good place to start to get some of your basic questions answered. There’s so much to cover that we can’t list everything, but it’s a start. If you think there are some questions missing, feel free to let us know, and we will add them to the list.
Foundation Publications and Newsletters
If you are looking for a much more comprehensive read on various topics relating to GBS, CIDP and variants, make time to spend with our publications. These documents have been created by the Foundation and maintained over the years through the help of our member support. Within them, you will find details on topics that can be gained and shared only through experience. Due to their popularity, we’ve translated them into International Versions for the most requested languages.
- Update from the International Guillain–Barré Syndrome Outcome Study (IGOS): Diagnosis and management of Guillain–Barré syndrome in ten steps [English]
- Diretrizes Baseadas em Evidências: Diagnóstico e manejo da síndrome de Guillain–Barré em dez etapas [Portuguese]
- Guia Basada en la Evidencia: Diagnóstico y manejo del síndrome de Guillain-Barré en diez pasos [Spanish]
- An immunoglobulin therapy for patients with CIDP to be covered under Medicare Part B starting July 18 (patients)
- An immunoglobulin therapy for patients with CIDP to be covered under Medicare Part B starting July 18 (HCP)
- FDA Approved Prescribing Information Update for Subcutaneous Immunoglobulin Therapy
There are many online resources that can provide additional information necessary for treatment and recovery. Here are some we’ve found helpful along with some that our members have shared. We’ve broken them down by category for your reference.
Patient Services and Resources
- Center for Disease Control (CDC)
- I.G. Living
- National Infusion Center Association (NICA)
- Patient Advocate Foundation
- Patient Services Incorporated (PSI)
- Plasma Protien Therapeutics Association (PPTA)
- National Institute of Health (NIH)
- National Organization of Rare Disorders (NORD)
- United States Social Security Administration (SSA)
- US Food and Drug Association (FDA)
Allied Support Organizations
- GBS/CIDP Foundation of Canada / Foundation Canadienne du SGB/PDIC
- CIDP Italia
- CIDP Japan
- GAIN (Guillain-Barre & Associated Inflammatory Neuropathies)
- GBS/CIDP SUPPORT GROUP in Queensland Australia
- The Inflammatory Neuropathy Support Group of Victoria Inc.
- GBS in Germany
- GBS in the Netherlands
- CIDP in the Netherlands
- MMN in the Netherlands
- GBS Support Group New Zealand
To view our full list of international resources, please visit this page.