Foundation News

Resource from PPTA Regarding COVID-19

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…

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A statement from the GBS|CIDP Foundation regarding the COVID-19

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…

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Life after GBS for Youth and Teens

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…

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Medicare and Home Infusion IVIg: What You Need to Know

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…

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Rare Disease Day 2020

Giving Hope to our Global Rare Community for #Rarediseaseday Rare Disease Day (RDD) takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year the GBS|CIDP Foundation International has several RDD activities…

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GBS|CIDP Foundation International Becomes a Member of the National Health Council

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…

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A Clinical Study of Rozanolixizumab in Patients with CIDP

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…

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End Of Year Advocacy Recap

2019 has been a whirlwind of advocacy activity! We launched a new toolkit, a new Advocacy Action Center, reintroduced a Medicare IVIG Access Enhancement Bill, and moved our legislative priorities forward. Kudos to all of your hardwork! Before we think about what is in store for 2020 advocacy, let’s get a more detailed update on…

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Update from the International Guillain–Barré Syndrome Outcome Study (IGOS)

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…

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Treatment Options for Patients with CIDP

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…

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Advocacy On & Off Capitol Hill

By Chelsey Fix, Advocacy Manager I blinked and it turned into November! It seems like no time at all since we started this important advocacy work during Awareness Month in May, but I have to remind myself that it has been 6 months! Besides the essential work we have done together to advance HR 2905…

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Pagination