Latest News On Relevant Topics
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.
People With Rare Diseases Face a Host of Unique Challenges Dennis Jackman, Senior Vice President of CSL Behring, has written an informative article published in the BIOtechNOW editor on the challenges faced by people with rare diseases, such as GBS and CIDP. He discusses ways to overcome these barriers and methods to improve access to care for patients diagnosed with rare diseases. Click here for full access to the article’s contents.
IVIG Access Critical to Those With Neurological Disorders
This article is written by Ed Gdula, the director of advocacy for the GBS-CIDP Foundation. It discusses IVIG access and its importance to those with rare neurological disorders, including GBS and CIDP.
Click here to read about Nobuhiro Yuki’s study to understand the pathogenesis of GBS in “Guillain-Barre Syndrome and anti-ganglioside antibodies: a clinician-scientist’s journey.”
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. Click here to read their blog.
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 here, or the lay summary.
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.
Privigen Shows Improved Function for CIDP Patients 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.
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.
“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 highlights the most beneficial treatments.
Former Quarterback Danny Wuerffel Diagnosed with Guillain-Barré Syndrome Wuerffel noticed he was losing sensation in his legs and strength in his arms shortly after he battled a stomach virus June 4. Read complete article.
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 it was likely to be food poisoning, a later article from Food Safety News associated the outbreak to the local water supply. It’s unclear at this point whether the water had contributed to the outbreak.
The Largest Survey of CIDP Patients Published in July 2011 A survey was mailed to 2,400 patients registered with the GBS-CIDP Foundation International in December 2010.
The assessment form contained questions on demographics, past and present treatment patterns, disability level, neuropathic pain & quality of life (QOL), and insurance. Disability was measured using the Rasch-built Overall Disability Score (R-ODS), a 22-item instrument specifically designed for patients with GBS and CIDP. QOL was captured using the SF-36. Descriptive statistics were used in the analysis. More
Wearable Robots Help Paralyzed Warriors Walk Again Walking is one of the many things in life that most of us take for granted. Now, for those who can’t, a technological marvel could prove miraculous. Read complete article.