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.

A Capitol Hill Kick-Off for GBS|CIDP Awareness Month

2024 Hill Day Written by Ellie Herman, Advocacy Coordinator  To kick off the first day of GBS|CIDP Awareness month, the Foundation went to Capitol Hill with over 30 volunteers consisting of patients, care partners, health care professionals, and many of our staff. Prior to Hill Day, volunteers participated in a compelling storytelling webinar series to…

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Early Detection and Diagnosis of CIDP

Early Detection and Diagnosis of CIDP Discover firsthand insights from CIDP patient and Foundation staff Kelly McCoy, alongside GMAB members Chafic Karam, MD and Jeff Allen, MD, as they share their experiences in this informative article. Early detection is crucial in managing CIDP, and their stories shed light on the importance of timely diagnosis. Let’s…

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Navigating Financial Assistance and Insurance: Your Comprehensive Guide

Navigating Financial Assistance and Insurance: Your Comprehensive Guide Managing the financial aspects of chronic conditions like Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) can be overwhelming. Our Financial Assistance and Insurance Resources portal at the GBS|CIDP Foundation International offers invaluable guidance to navigate this complex landscape with confidence. Understanding Your Coverage: Our portal…

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GBS|CIDP Foundation Announces Philadelphia Skyline to Illuminate Blue and Green in Honor of GBS|CIDP Awareness Month

GBS|CIDP Foundation Announces Philadelphia Skyline to Illuminate Blue and Green in Honor of GBS|CIDP Awareness Month The GBS|CIDP Foundation International proudly announces that the Philadelphia skyline will be illuminated in blue and green on May 21st in honor of GBS|CIDP Awareness Month. The buildings participating are: Subaru of America, Peco, Cira Center, and 1735 Market. The…

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First Annual Dr. Arthur Asbury Endowment Lecture

We are honored to announce the first annual Dr. Arthur Asbury Endowment Lecture, sponsored by the GBS|CIDP Foundation International. This first lecture regarding the rare neuromuscular conditions of GBS, CIDP and MMN, will be presented by Dr. Jeffrey Allen of the University of Minnesota, on Saturday, May 18, 2024 at the Penn Neuromuscular Symposium, Perelman…

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Statement from GMAB, GBS in Mexico.

GBS is a rare immune disorder that damages peripheral nerves (that is, nerves outside of the brain and spinal cord).  In most people GBS is triggered by exposure to an infectious illness, and the most frequently encountered infectious illness is a gastrointestinal infection known as Campylobacter jejuni. Campylobacter jejuni is commonly transmitted through food, particularly undercooked poultry…

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Andrew Harris, GBS survivor, creates fundraising event in Maine

Andrew Harris, a GBS survivor, has combined his passion for beer with a desire to assist others facing the challenges of GBS to make a successful fundraiser at Mast Landing Brewery in Maine. Moved by Andrew’s courageous battle, Mast Landing Brewery crafted a signature beer in his honor, symbolizing solidarity and support for individuals affected…

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2024 MMN Research Grant Announcement

In 2022, the Foundation embarked on fundraising endeavors aimed at research dedicated to advancing treatments and diagnostics for Multifocal Motor Neuropathy (MMN). We extend our heartfelt gratitude to our community for their unwavering support and contributions during MMN Awareness Month this February. Thanks to these collective efforts, and to the innovative research being conducted in…

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Applying for Social Security Disability Insurance

Applying for Social Security Disability Insurance Written by: Amy Stein, MSW, LCSW, Health Navigator During my years of working as a social worker in hospitals, a common question among my patients was “should I apply for disability?”  There is no “one answer fits all” reply to this question.  Did the patient mean a disability policy…

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Rare Disease Day 2024

Rare Disease Day: February 29, 2024 About Rare Disease Day Launched by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day is a patient-led international awareness campaign that brings people together in solidarity with the 300 million patients impacted by rare diseases worldwide. In 2009, Rare Disease Day became a global event when The National Organization for Rare Disorders (NORD) officially sponsored the celebration in the United States.  GET INVOLVED!…

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Why Rare Conditions Deserve Attention and Recognition as a Global Health Concern

As Rare Disease Day is approaching, CSL Behring is in touch with leaders of patient advocacy groups to explain why rare conditions deserve attention and recognition as a global health concern. Click here to read what Lisa Butler, the Executive Director of GBS|CIDP Foundation, and other nonprofits have to say. Having any disease can be…

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Brenda, Making the Most of Now with her Rollator

Brenda Perales is a patient of Multifocal Motor Neuropathy (MMN) and has been associated with the MMN community and Foundation for several years. During her journey with MMN, she always felt stressed whenever she had to walk alone for more than 100 feet. This was true whether she was walking through the halls of the…

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New England Disabled Sports – Adaptive Sports Opportunity

New England Disabled Sports (NEDS) is a nonprofit organization based in New Hampshire. They provide expert adaptive sports instruction to adults and children with physical and cognitive disabilities. NEDS aims to ensure that every individual, regardless of their ability, has the opportunity to participate in sports and recreation activities. For more information visit https://nedisabledsports.org/about-neds/

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