Share Your GBS Journey – Participate in Our Market Research Study for Patients and Care Partners We are excited to announce an upcoming market research study focused on understanding the experiences of individuals affected by Guillain-Barré Syndrome (GBS) and their care partners. The goal of this is to learn more about your GBS journey to…
University of Kansas Neuromuscular Review Course January 25, 2025, at the Bellagio Hotel in Las Vegas, Nevada Register now for the Neuromuscular Review Course, presented by leading neurologists specializing in neuromuscular clinical issues related to diagnosing and treating neuromuscular diseases. This program is designed for neurologists, nurse practitioners, physician assistants, trainees, and other HCPs treating…
University of Alabama at Birmingham (UAB) team joins the Birmingham Walk & Roll event The GBS|CIDP Foundation International team was honored to have the University of Alabama at Birmingham (UAB) team join us for the Birmingham Walk & Roll event. Thanks to Foundation staff member, Lori, for her pivotal role in connecting with Eroboghene Ubogu…
The Big Get Together Article was written by: Claire Shaw, CIDP Patient and GAIN Community Member When Rich asked me whether I wanted to say a few words today about the GBS and CIDP community, it made me wonder precisely how long I’ve been a member of the club that no one wants to be…
Educational Webinar Now On-Demand! “What Happens in CIDP and How Does Immunoglobulin Treatment Work?” is now available to watch anytime on-demand. Immunoglobulin (Ig) treatments are a type of therapy that doctors use to help people with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It’s important for patients to know how these treatments work and to feel comfortable…
On June 5th, 2024, the GBS|CIDP Foundation International organized a patient-led listening session on Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). With attendance from the National Institute of Health (NIH) and 23 FDA offices, panelists were at the heart of the meeting to express various aspects of life with CIDP, including: For more information on the Patient…
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,…
Senators Mark Kelly (D-AZ) and Thom Tillis (R-NC) introduced the bipartisan Preserving Life-saving Access to Specialty Medicines in America (PLASMA) Act, legislation to ensure individuals with rare diseases and immunodeficiencies have access to necessary plasma-based medicines. “The GBS|CIDP Foundation International proudly supports the PLASMA Act and all policies that promote patient access to plasma medicines. Many…
Development of a major histocompatibility complex class II conditional knockout mouse to study cell-specific and time-dependent adaptive immune responses in peripheral nerves Published by: Eroboghene E. Ubogu MD, Jeremy A. Conner BS, Yimin Wang PhD, Dinesh Yadav PhD, Thomas L. Saunders PhD Read the research article here: https://onlinelibrary.wiley.com/doi/10.1002/mus.28193
Multifocal Motor Neuropathy (MMN) Patient Assistance Program NORD’s Multifocal Motor Neuropathy Patient Assistance Program offers eligible individuals diagnosed with MMN financial support to pay for out-of-pocket healthcare costs directly related to the care and treatment of this diagnosis. Contact info for NORD’s MMN Program: Phone: 203-263-9484 Email: MMN@rarediseases.org The quickest way to apply is on…
Questions to Ask Your Healthcare Provider When living with GBS|CIDP, MMN or a related condition, having the right questions ready for your next doctor’s appointment is key to getting the care and support you need. Here are a few important questions to consider asking: Download the PDF here.
Ecotherapy Ecotherapy integrates nature-based activities and ecological awareness into therapeutic practices, aiming to enhance mental health by fostering a connection with the environment, whereas regular talk therapy primarily involves verbal discussions in a clinical setting to address psychological issues. The information below was sourced from the Getting Well Outdoors Wellness Webinar. You can find the…
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…
Strength to Move Forward: Drake’s CIDP Experience and an Overview of an IVIg Treatment Option for Adults with CIDP This program is sponsored by Pfizer, Inc. Now Available to Watch on Demand Join Lisa Butler from the GBS|CIDP Foundation International, a neurologist, and a person living with CIDP for the online educational presentation, “Strength to…
Spotlight
