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…
Has Your Child been diagnosed with CIDP? Octapharma is seeking Pediatric patients for a clinical research study (NGAM-11) to access two different IVIg doses in the treatment of CIDP For US Audience Only Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disease where the body’s natural defenses, like antibodies, attack the covering of the nerves,…
“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
Speaker Series – Episode 16 Summary In honor of MMN Awareness Month, we talked with Dr. Tom Harbo, a neurologist, Pam Stoikopoulos, an MMN patient, Chrissie Jenkins, a Licensed Social Worker and a member of our Board of Directors, and Richard Sperry, a MMN patients and the Foundation’s Chief Strategy Officer. Relevant Resources Centers of…
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:…
Speaker Series – Summary This summary is a recap of an episode from our “Ask the Experts” program, where we talked with Dr. Maureen Su, endocrinologist and a research professor at UCLA. This summary will explore vaccine efficacy and the biology of autoimmunity. Relevant Resources Centers of Excellence All about Vaccines Treatments and Access Portal
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…
CIDP Financial Assistance Fund NORD’s CIDP Patient Assistance Program offers eligible individuals diagnosed with CIDP financial support (Premium, Copay, and Medical Assistance) to pay for out-of-pocket healthcare costs directly related to the care and treatment of this diagnosis. Contact info for NORD’s CIDP Program: Phone: 203-267-9005 Email: CIDP@rarediseases.org The quickest way to apply is on…
The GBS|CIDP Foundation International is a global nonprofit organization supporting individuals and their families affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN) and related conditions through a commitment to support, education, research and advocacy. The steadfast commitment to improving lives of patients impacted by these conditions propagated the responsibility…
GBS|CIDP Foundation International Welcomes New Congress and New Administration, Additional Opportunities for Advocacy This month, GBS|CIDP Foundation International sent its introductory and welcome letter the 119th United States Congress, expressing the needs of our patient and caregiver community. In the letter sent to all current US Representatives and Senators, we outlined our vision for convenient…