Community News

Given these disorders are so rare, it can be challenging to find news stories, blogs or other online information. As part of keeping our community informed and up-to-date, we continually gather news-worthy information and share it here.

We also like hearing from you about the types of stories, articles, etc. that you are interested in reading. Feel free to send us feedback or even articles that you suggest would be appropriate and helpful for others.

Foundation Advocacy Update

In March, the GBS/CIDP Foundation International hosted our 2013 Advocacy Capitol Hill Day. We were joined by patient advocates and their family members from throughout the United States, from Maryland to Hawaii.

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Nobuhiro Yuki’s Study

Read more about Nobuhiro Yuki’s study to understand the pathogenesis of GBS in “Guillain-Barre Syndrome and anti-ganglioside antibodies: a clinician-scientist’s journey.”

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Privigen Shows Improved Function for CIDP Patient

CSL Behring reports that data presented from the Privigen Impact on Mobility and Autonomy (PRIMA) trial at the Peripheral Nerve Society Inflammatory Neuropathy Consortium Meeting in Rotterdam, Netherlands, suggests that treatment with Privigen®, an intravenous immunoglobulin (IVIg), may lead to improvement in function in CIDP patients. Click here to learn more.

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New Treatment for MMN Patients

Baxter International Inc. announces that the U.S. Food and Drug Administration has approved the first immunoglobulin treatment for Multifocal Motor Neuropathy patients in the United States. Click here to learn more.

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Outcome and Its Predictors in GBS

The Journal of Neurology, Neurosurgery and Psychiatry published an article for GBS patients and families on who is most likely to improve after treatment for Guillain-Barré Syndrome. Read the full study or the lay summary.

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Guillain-Barre Syndrome

Now@NEJM The New England Journal of Medicine posts Clinical Pearls, Morning Report Questions, and free access to an article on the current understanding, diagnosis, and management of GBS. Read the blog now

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People With Rare Diseases Face a Host of Unique Challenges

By Dennis Jackman, Senior Vice President, Public Affairs, CSL Behring People with rare and serious medical disorders encounter a host of unique challenges–from obtaining a correct diagnosis, to identifying an appropriate course of treatment and gaining affordable access to the care they need. They and their families, caretakers and health care providers face a constant struggle to identify…

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GBS Cluster on US-Mexico Border

In late July of 2011, Reuters published an article on the Arizona Department of Health Services reporting of a cluster of 24 cases of GBS in Yuma County. It is located in far western Arizona and neighboring San Luis Rio Colorado, in Mexico’s northern Sonora state. Even though an earlier article on msnbc.com had reported…

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The Mystery of CIDP Podcast

Ellen Schecter, an award-winning writer takes us through a time when she felt her life was shattered by this painful disease, and then shares how she was able to forge a new life filled with personal discovery and success. Neurologist and Johns Hopkins expert Dr. David Cornblath also sheds light on this mysterious disorder and…

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New Guidelines from AAN

The American Academy of Neurology recently published new guidelines, “Intravenous Immunoglobulin in the Treatment of Neuromuscular Disorders” on the efficacy of IVIg treatments in GBS, CIDP, MMN, and other neuromuscular disorder patients.

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The Largest Survey of CIDP Patients Published in July 2011

RESEARCH IS CRITICAL TO SERVING THE CAUSE & THE COMMUNITY The Largest Survey of CIDP Patients Published in July 2011 A survey was mailed to 2,400 of our patient members in December 2010. The results and conclusion were compelling, and supported what specialists have suspected in recent years. Read below for all the details. Demographics…

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