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.
This statement is provided by the GBS|CIDP Foundation Global Medical Advisory Board. We also encourage you to contact your healthcare provider about whether it would be a good idea for you to have a COVID-19 vaccine. There has been much discussion about COVID-19 vaccines for individuals who are “immunocompromised.” GBS and CIDP and immune-mediated disorders….
CIDP Assistance Funds – Now Open for Enrollment! The GBS|CIDP Foundation International is excited to announce funding opportunities for individuals living with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). A special thanks to the generous supporters of these funds. If you’re interested, please review the eligibility criteria below. We encourage you to apply even if these programs…
An Interview with Ralph G. Neas, GBS and CIDP Written by: Ellie Herman, Advocacy Coordinator Thirty-Four years ago, the Americans with Disabilities Act (ADA) was signed into law. We decided to celebrate the anniversary of this monumental piece of legislation by sitting down with Ralph G. Neas, a key civil rights leader in Washington, who…
Back by popular demand, our 2024 Virtual Summit, on Friday, September 27th and Saturday, September 28th, will feature a wide range of educational panels and presentations, as recorded at the 2023 Washington, DC Patient Symposium. The Virtual Summit is a FREE and easy-access one-day event, showcasing the best practices for navigating the journey through GBS,…
Argenx announced that the U.S. Food and Drug Administration (FDA) has approved VYVGART Hytrulo for treating adult patients with chronic inflammatory demyelinating polyneuropathy (CIDP). For more information on this new treatment, click here.
“For nearly 30 years there has been quite literally no advancement in treatments for GBS. This research update, including the participation of two of the founding fathers of our global medical advisor board, offers incredible promise and hope for the GBS community.” –Lisa Butler, Executive Director, GBS|CIDP Foundation International Check back often as we will…
Inspiring stories of resilience remind us of the human spirit’s strength. One such story is that of a Brooklyn man, Michael Ring, diagnosed with GBS who defied the odds to return to his passion for running. Michael was featured on News 12 The Bronx, showcasing his incredible journey from the early stages of his diagnosis…
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…
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…
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…
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…
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…
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…
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…
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…