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.
In a powerful full-circle moment, a CIDP patient and dedicated GBS|CIDP Foundation volunteer, Amanda, returned to Mount Sinai Hospital in New York City—not as a patient this time, but as an advocate. She attended the annual Mount Sinai Spinal Cord Injury (SCI) Research Fair to raise awareness about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and to…
Be Part of the Tour de MMN – Local Meet-Ups to Support a Global Cause Join us for a Tour de MMN Community Meet-Up, a series of special gatherings to support Clive Phillips, Multifocal Motor Neuropathy (MMN) Patient and his team as they embark on an extraordinary cycling journey inspired by the 1955 Tour de…
We’re kicking off awareness month worldwide! Our volunteer from South Africa joined Nancy DiSalvo, her family, and the local city council to dedicate the FIRST-ever GBS CIDP park bench in Palermo, Italy.
The first biennial GBS|CIDP Foundation Leadership Collaborative convened in Boston! Every two years, the Foundation will bring together leadership from our Global Medical Advisory Board and other key experts to address emerging challenges that disrupt the treatment, care, or innovation in GBS, CIDP, and MMN. This year’s Collaborative began by listening to patients. In an initial meeting,…
From paralysis to purpose — Shane Sumlin’s inspiring journey through GBS is a powerful reminder of resilience and hope. Now a GBS|CIDP Foundation board member, he’s turning his experience into advocacy to help others facing this rare disease. Thank you to KTBS News for sharing his story! Read more about his story on the KTBS…
Speaker Series Summary Episode 18: In this episode of our Speaker Series, we dive into what a person might feel as a result of GBS residuals and what that person might feel is normal aging, how to tell the difference, and what to do about these symptoms with University of Pennsylvania neurologist Dr. Chafic Karam….
Thank you to the AANN (American Association of Neuroscience Nurses) for inviting us to share patient stories, Foundation resources & support for the Neuroscience Nurse Community! Maureen Neville and Morgan Duhe joined patient advocates, Jessica Schexnayder and Julie Belle, at AANN 2025, for a panel discussion on the patient journey of CIDP & MMN, and the many…
On Saturday 22 March 2025 Neuromuscular Diseases Day, Director of International Affairs, Nancy DiSalvo represented the Foundation at an event held simultaneously in 19 Italian cities. Many healthcare and legislative were represented with the participation of authorities, ASP management, expert neurologists, physiotherapists, patients and patient associations. Special thanks to Dr. Marcello Romano and the Center…
“Our family was profoundly affected by Guillain Barre Syndrome in 2001 and now I am humbled by the work we do and the patients we serve. We still need stronger awareness for quicker diagnosis and additional treatments for improved recovery!” – Lisa Butler, President and CEO of the GBS|CIDP Foundation International Read Article: https://www.northjersey.com/story/opinion/2025/03/16/we-urgently-need-better-guillain-barr-syndrome-treatments-opinion/82234315007/
New Insights into Diagnosis, Treatment, and Disability in People Living with Guillain-Barre Syndrome
Publication: Practical Neurology (Wayne, PA) Headline: New Insights into Diagnosis, Treatment, and Disability in People Living with Guillain-Barre Syndrome To read the article, visit https://practicalneurology.com/news/new-insights-into-diagnosis-treatment-and-disability-in-people-living-with-guillain-barre-syndrome
To read about this article, visit https://www.morningstar.com/news/pr-newswire/20250228ph29744/new-survey-offers-detailed-view-of-short-and-long-term-burden-of-guillain-barr-syndrome
At GBS|CIDP Foundation International, we recognize the power of unity and awareness in the fight against rare diseases. On Rare Disease Day, we stand with our global community to shine a light on Guillain-Barré syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), and related neuropathies. This day is a vital reminder that…
The beautiful city of Agrigento, Italy – nominated as the Italian City of Culture 2025 – became a hub of history, art, and hope as it hosted the Rare Disease event: “Innovation in Research, Culter and Care.” Patients, caregivers, patient organizations, researchers, and expert physicians came together to share knowledge, enhance collaboration, and envision a…
Advocacy Policies The GBS|CIDP Foundation International is committed to advocating for policies that enhance the lives of individuals affected by Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN) and related conditions. Our policy engagement focuses on key areas that directly impact our community. Policy Priorities To achieve these goals, we will:…
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 and…