Diagnosis and management of Guillain–Barré syndrome in ten steps Portuguese Spanish Chinese Nature Reviews Neurology: https://www.nature.com/articles/s41582-019-0250-9; Published Sept 20, 2019. Explanation of the above referenced article below.https://creativecommons.org/licenses/by/4.0/ Authors: Sonja Leonhard, Melissa Mandarakas, Francisco de Assis Aquino Gondim, Kathleen Bateman, Maria Lúcia Ferreira, David Cornblath, Pieter van Doorn, Mario Dourado, Richard Hughes, Badrul Islam, S Kusunoki, Carlos Pardo, Ricardo Reisin, Jim…
Free online program for patients and caregivers Date: Wednesday, December 11, 2019 Time: 3:00 PM – 4:15 PM ET (Support for this patient education program provided by Grifols and coproduced with NeuroCareLive) Intravenous immunoglobulin (IVIG) is a treatment for Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Over the course of several hours, naturally occurring antibodies from healthy…
By Chelsey Fix, Advocacy Manager It’s been over 20 years since Schoolhouse Rock released its last video, which makes me think that we all need a refresher on the process by which a bill becomes a law! As a throwback, enjoy everyone’s favorite Schoolhouse Rock civics lesson by clicking here. As a recap, that I…
Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder.
The Food and Drug Administration granted marketing clearance Friday for Hizentra, a treatment for chronic inflammatory demyelinating polyneuropathy (CIDP) developed by CSL Behring. Lisa Butler, executive director of the GBS/CIDP Foundation International, said “The approval of Hizentra offers patients who were once burdened by traveling to the infusion center or hospital the flexibility to self-administer their treatment at…
10 Charities Worth Watching Many of America’s most effective charities are also household names. But some well-known charities are less effective than you’d think, while a number of lesser known charities are truly exceptional. These 10 charities all operate on less than $2 million a year, but they all earn a four-star rating from Charity Navigator….
2017 GBS|CIDP Foundation Grant Awardees (#1) Title of the project: Enhance Peripheral Nerve Repair by Modulating Macrophage Subsets Investigator: Gang Zhang, M.D; Ph.D Assistant Professor of Neurology University of Texas, Health Sciences Center at Houston Synopsis: Intravenous immunoglobulin (IVIg) is now the first-line therapy for Guillain-Barré syndrome (GBS). However, there are many disadvantages including high cost, supply…
Letter Introduced by Reps. Kevin Cramer (R-ND) & Doris Matsui (D-CA) Seeks to Protect Quarter of a Million Americans Who Depend on Charitable Assistance for Access to Critical Healthcare WASHINGTON, D.C. (May 31, 2017) – The Marketplace Access Project (MAP), a group of leading national patient advocacy organizations dedicated to protecting non-profit insurance premium and…
Largest Ever CIDP Clinical Study Completed PATH study evaluated subcutaneous immunoglobulin efficacy and safety for treating Chronic Inflammatory Demyelinating Polyneuropathy KING OF PRUSSIA, Pa. – 01 March 2017 – Global biotherapeutics leader CSL Behring announced today that it has completed the largest ever Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) trial, known as PATH (Polyneuropathy And Treatment…
Can you tell me about the GBS|CIDP Foundation and the work you do? We were founded 35 years ago by Estelle Benson. Her husband, Bob Benson, was diagnosed with GBS and when she went to look for information and support services for this rare condition, nothing existed. She vowed that she would do something about…
Global Medical Advisory Board Member, Dr. David Cornblath, Pens ‘Guillain–Barré Syndrome Associated with Zika Virus Infection in Colombia’ for the The New England Journal of Medicine. Click here to follow link to the article in the New England Journal of Medicine. For PDF version click here.
Access to Marketplace Insurance Act (H.R. 3742) This bill amends the Patient Protection and Affordable Care Act to require health insurers to accept, on behalf of individuals enrolled in qualified health plans, payments made by certain third parties, including state and federal government programs, Indian tribes, tribal organizations, urban Indian organizations, and certain tax exempt…
Congressman John Garamendi, recently honored as our Legislator of the Year at our 35th Anniversary Gala, continues to be a Champion for GBS and the GBS|CIDP Foundation! Congressman Garamendi recently released the following “Dear Colleague” letter to help raise awareness and support of our conditions and the services we provide in the wake of the…
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