The Plasma Protein Therapeutics Association (PPTA) has provided a statement specific to plasma protein therapies in light of the COVID-19 pandemic. CLICK HERE to read the statement. The PPTA notes that their Pathogen Safety Steering Committee continues to monitor the situation and is currently working on a broader update for the community. We will share these…
The coronavirus COVID-19 situation is evolving rapidly. In the interest of concerns and questions that the Foundation is receiving regarding the spread of the coronavirus COVID-19, the GBS|CIDP Global Medical Advisory Boards offers the following statement: GBS, CIDP and variants will not put patients at any higher risk of contracting the COVID-19, but those who…
By Diana Castro, MD Despite recovery of muscle weakness in most children, many patients experience persistent fatigue, pain and anxiety/depression. These symptoms can be incapacitating and can affect academic and social development. The mechanism underlying post-GBS fatigue is unclear. Fatigue can be secondary to stress and psychological factors. Other possibilities are deconditioning due to the…
By: Chelsey Fix Medicare is confusing – that’s a fact! Add the confusing Medicare system on top of a complex treatment for a rare disease, and it’s easy to feel overwhelmed. The Foundation is here to help all of our patients navigate health insurance headaches! For now this article explains the current Medicare situation for…
In 2019, The GBS|CIDP Foundation International was honored with a membership to the National Health Council (NHC). The Foundation joins over 140 other organizations, including major pharmaceutical companies, well-known patient support foundations, and respected professional societies, in their Membership. The mission of the NHC is to provide a united voice for the 160 million people…
Clinical research studies are scientific evaluations in people, led by researchers and physicians. They can help advance the understanding of a disease and are the most important way for researchers to find out if potential new treatments are safe and effective. Studies like these are needed to be able to make new treatments available to…
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…
Please join us in congratulating, 2019 GBS|CIDP Research Grant Recipient, Betty Soliven, MD for her study: Exploring the possible role of TGR5 and FXR in autoimmune neuropathy Betty Soliven, MD is a Professor and the Associate Chair for Faculty Affairs of the Department of Neurology at the University of Chicago Synopsis There is increasing evidence…
Evidence for nutritional interventions, exercise, supplements, acupuncture, and mindfulness-based practices in the treatment of neuropathic pain is encouraging.
Please join us in congratulating, 2019 GBS|CIDP Research Grant Recipient, Ruth Huizinga, PhD, Assistant professor, Department of Immunology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands. Project Title: Identification and characterization of circulating plasmablasts that produce anti-ganglioside antibodies in patients with Guillain-Barré syndrome. Synopsis: Antibodies (Abs) to gangliosides play a key role in the pathogenesis…
This week brings a mix of emotions to the Foundation as we say goodbye to our dear friend, co-worker, and longtime member of the GBS|CIDP family, Camille Yee. After 28 years of outstanding service, Camille, a recent new grandmother, has decided to retire from her position as Chief Financial Officer of the GBS|CIDP Foundation so…
The 2019 GBS|CIDP Foundation Research Grant Recipient is Dr. Eduardo Nobile-Orazio, Associate Professor of Neurology, at Milan University, and Chair of the Neuromuscular and Neuroimmunology Service at Humanitas Clinical and Research Institute in Rozzano, Milan, Italy.
Published in The Lancet, May 7, 2019 Co-authored by Carina Bunschoten, Bart C Jacobs, Peter U K Van den Bergh, David R. Cornblath, Pieter A van Doorn
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…
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