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Foundation News

• 2018 GBS|CIDP Foundation Research Grant Recipient Publishes Update in Journal of Neurology, Neurosurgery & Psychology
  CSF sphingomyelin: a new biomarker of demyelination in the diagnosis and management of CIDP and GBS Principal Investigators: Luana Benedetti, MD, PhD  and  Lucilla Nobbio, PhD, University of Genova, ITALY CIDP and GBS are immune-mediated neuropathies characterized by strong heterogeneity in terms of clinical manifestations, prognosis and response to treatment. They are treatable diseases and early…
• 2018 Research Grant Finalists Announced
  We are pleased to announce our 2018 Research Grant Awardees.
• 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…
• A 30th Celebration to Remember
  Cheers to 30 Years!  It was the best of all worlds this past November at the 2018 Symposium in San Diego where a record-breaking 575 attendees gathered for 3 days of GBS|CIDP patient support, education, research and advocacy! Thank you to our presenters, sponsors, volunteers and every member of this amazing community for the moments…
• A Clinical Study of Rozanolixizumab in Patients with CIDP
  Clinical research studies are scientific evaluations in people, led by researchers and physicians. They can help advance the understanding of a disease and are the most important way for researchers to find out if potential new treatments are safe and effective. Studies like these are needed to be able to make new treatments available to…
• A one-year Research Update from the 2022 Benson Fellowship Awardee
  A one-year Research Update from the 2022 Benson Fellowship Awardee, Elba Pascual-Goñi MD, PhD.   Our 2022 Benson Fellow, Dr. Pascual-Goñi, carries out patient care and translational research tasks in the field of inflammatory neuropathies in the Neuromuscular Diseases Unit of the Hospital de la Santa Creu i Sant Pau (Barcelona). She is responsible for…
• A Practical Guide to Identify Patients With Multifocal Motor Neuropathy, a Treatable Immune-Mediated Neuropathy
  A Practical Guide to Identify Patients With Multifocal Motor Neuropathy, a Treatable Immune-Mediated Neuropathy Click here to view the article Published by PubMed on January 8, 2024.
• Adapt. Adjust. Accept.
  Highlights from Adaptive Devices Ask the Experts Videocast “My devices enable me to attain self-sufficiency and independence” – Victor Sheronas The recovery process from GBS, CIDP, MMN and other variants can be a long, even sometimes life-long process. When patients leave the hospital, they are transitioning into a space that in most cases is not…
• Advocating for Access: Taking H.R. 1143 to Capitol Hill
  Recently, we visited the Capitol to raise awareness of our patient community living within the United States, and advocate for our bill H.R. 1143—the Medicare IVIG Access Enhancement Act of 2025. This act would amend Title XVIII of the United States Social Security Act to expand coverage of the in-home administration of intravenous immunoglobulin (IVIG)…
• An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH
  (Please see the following open letter statement authored by members of the GBS|CIDP Foundation International medical community as referenced.) As clinician/scientists who have spent careers studying GBS, we are concerned that your statement on the “New Normal” television show about GBS and the COVID vaccine will have unintended consequences. Your statement is already all over…
• An Update from the International Guillain-Barre Study (IGOS) by Dr. Bart Jacobs
  The IGOS-1000 cohort has now been tested for the main preceding infections and is currently tested for antibodies extensively. We have also recently finalized a study in IGOS on the association between GBS and SARS-CoV-2 during the first 3 months of the pandemic. In my view this study shows the importance of having an ongoing…
• Annexon Announces Positive Topline Results from Pivotal Phase 3 Trial for First-in-Class C1q Blocking Antibody ANX005 in Guillain-Barré Syndrome
  “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…
• Announcing 2019 GBS|CIDP Research Grant Awardee, Ruth Huizinga, PhD, Assistant Professor, Department of Immunology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands
  Please join us in congratulating, 2019 GBS|CIDP Research Grant Recipient, Ruth Huizinga, PhD, Assistant professor, Department of Immunology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands. Project Title: Identification and characterization of circulating plasmablasts that produce anti-ganglioside antibodies in patients with Guillain-Barré syndrome. Synopsis: Antibodies (Abs) to gangliosides play a key role in the pathogenesis…
• Announcing 2022 Benson Fellowship Awardee
  Announcing 2022 Benson Fellowship Awardee, Elba Pascual Goñi MD, PhD The Benson Fellowship is a three-year fellowship that provides an opportunity for scientists to engage in peripheral nerve of study. The Fellowship provides funds of up to $150,000 for three years, but only one Benson fellowship is awarded every three year period. We are pleased…
• Announcing 4 New Centers of Excellence, including first in Pediatric Care
  Our Global Medical Advisory Board has set standards for what they consider to be excellent medical centers for the diagnosis and treatment of GBS and CIDP, MMN and related neuropathies. Based on levels of expertise, available treatments, facilities, and research capabilities, these are the medical centers that we can unequivocally recommend as “Centers of Excellence”….
• Announcing the 2017 GBS|CIDP Foundation Grant Awardees
  2017 GBS|CIDP Foundation Grant Awardees (#1) Title of the project: Enhance Peripheral Nerve Repair by Modulating Macrophage Subsets Investigator: Gang Zhang, M.D; Ph.D Assistant Professor of Neurology University of Texas, Health Sciences Center at Houston Synopsis: Intravenous immunoglobulin (IVIg) is now the first-line therapy for Guillain-Barré syndrome (GBS). However, there are many disadvantages including high cost, supply…
• 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…
• Argenx Announces FDA Approval of VYVGART Hytrulo for Chronic Inflammatory Demyelinating Polyneuropathy
  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.
• Benson Clinical Research Fellowship
  Claire Bergstrom Johnson My decision to apply for the Benson Fellowship stems from my commitment to advancing our understanding and treatment of inflammatory neuropathies. As a Clarendon Scholar nearing completion of my DPhil in Clinical Neurosciences at the University of Oxford, a significant achievement of my doctoral research has beenthe identification of unmutated autoreactive B…
• Breaking Down Barriers: Medicare Options for Infusion and Specialty Therapies
  Palmetto Infusion Patient Advocate Chrissie Jenkins, LISW-CP, and Medicare Benefits Counselor and Pharmacist Jerilyn Arneson, PharmD, BCOP break down the complexities of Medicare options in this webinar, offering essential tips and tools specifically tailored for those undergoing infusion or specialty therapy treatments.
• 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…
• Bridging Communities at the Mount Sinai Spinal Cord Injury Research Fair
  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…
• Celebrating 34 Years of the ADA with Ralph G. Neas
  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…
• Charity Navigator Names GBS|CIDP Foundation as ‘Charity Worth Watching’
  10 Charities Worth Watching Many of America’s most effective charities are also household names. But some well-known charities are less effective than you’d think, while a number of lesser known charities are truly exceptional. These 10 charities all operate on less than $2 million a year, but they all earn a four-star rating from Charity Navigator….
• Chief Financial Officer, Camille Yee, Retires after 28 Years of Service to the GBS|CIDP Foundation International
  This week brings a mix of emotions to the Foundation as we say goodbye to our dear friend, co-worker, and longtime member of the GBS|CIDP family, Camille Yee. After 28 years of outstanding service, Camille, a recent new grandmother, has decided to retire from her position as Chief Financial Officer of the GBS|CIDP Foundation so…
• CIDP Assistance Funds – Now Open for Enrollment!
  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…
• CIDP Disease Burden — Results of a US Nationwide Patient Survey
  In 2017, a nationwide survey of US CIDP patients was conducted to assess the impact of disease-related disability and treatment on lifestyle and work activities. Approximately 3250 individuals aged ≥18 years, recruited by the GBS|CIDP Foundation and self-reported to have CIDP, were invited to complete an online survey; of these, 475 completed the survey and…
• Clovis, CA Walk & Roll Chair in the News
  On March 4, the Fresno BEE published “Rare illness left this Clovis man paralyzed. Now he’s helping others,” featuring GBS|CIDP Foundation’s volunteer, Rob Vasquez of Clovis, CA. The Clovis Walk & Roll, March 9, hosted by Rob, is the first of the 2019 Walk & Roll season! See Fresno Bee Video and Article
• Congress Recognizes the month of May as GBS|CIDP Awareness Month
  On May 27, Congressman Garamendi, recognized the Month of May as GBS|CIDP AWARENESS Month and introduced the Medicare IVIG Access Enhancement Act to the House of Representatives. Read full script here Download (PDF)
• Coping with School & Treatment Plan for GBS|CIDP
  By Megan Kaump A diagnosis of GBS, CIDP, or variants is frightening and devastating for anyone, but when a child is diagnosed it adds a very different set of emotions and experiences. It is heart- breaking to see your child go through such challenges and there is the added component of how the child’s schooling…
• COVID-19 Vaccines and the GBS|CIDP Community
  The GBS|CIDP Foundation has received many questions about COVID-19 and its relationship to Guillain-Barré syndrome and CIDP.
• Dr. A.S. Fauci Corrects Previous Statement Regarding COVID-19 Vaccines & GBS
  As a follow up to the Foundation’s published article from Dec. 20, 2020, “An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH,” on January 15, 2021, Neurology Today published the following article “No Excess Risk for Neurologic Events Observed to Date from COVID-19 Vaccines.”   Read the full article…
• Dr. Jeffrey Allen, New Global Medical Board Chairman
  Please join us as we recognize Dr. Peter Donofrio, MD for all of his hard work and dedication as chairman of our Global Medical Advisory Board. As Peter steps down, we welcome Dr. Jeffrey Allen, MD as the new Chairman. Congratulations Jeff! We are honored to have your leadership and vision! Jeffrey Allen, MD is an Associate Professor in the Department of Neurology…
• Dr. Peter Donofrio, Chairman, Global Medical Advisory Board, GBS|CIDP Foundation International, Receives AANEM Distinguished Physician Award
  The American Association of Neuromuscular and Electrodiagnostic (AANEM) has awarded the 2020 Distinguished Physician Award to Peter Donofrio, MD, for his distinguished service as a clinician, educator and his overall support of AANEM.
• 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…
• Empowering Voices on Capitol Hill: Hill Day 2025
  On May 8th, the GBS|CIDP Foundation International proudly hosted our annual Hill Day, bringing together more than 20 passionate patients and advocates from across the country to empower their voices in support of the Medicare IVIG Access Enhancement Act. This vital piece of legislation would expand Medicare Part B coverage for in-home IVIG treatments for…
• Executive Director, Lisa Butler discusses legislation, for patients on Medicare, with NHC
  Executive Director, Lisa Butler discusses legislation, for patients on Medicare, with NHC. Full article here: https://nationalhealthcouncil.org/blog/guest-post-legislation-needed-to-improve-access-to-vital-treatment-for-medicare-rare-disease-patients/
• FDA Has Approved New Treatment Options for CIDP Patients
  FDA has approved both Takeda’s HYQVIA, a new maintenance therapy for patients with CIDP, and GAMMAGARD LIQUID®. The Foundation advocates for access to all products at all points of care. As always, the Foundation recommends consulting with your physician when exploring new treatment options.   More information at our HYQVIA Treatment and Access Page: https://www.gbs-cidp.org/treatments-access/takeda/ Approval…
• FDA Warning for Guillain–Barre Syndrome and the Johnson & Johnson COVID-19 Vaccine
  A Statement from the Foundation Global Medical Advisory Board The Washington Post and New York Times published on July 12, 2021 articles of a report by the FDA regarding cases of purported GBS after receiving the Johnson and Johnson COVID 19 vaccine.  Approximately 100 reports of suspected GBS were experienced by 12.8 million subjects who…
• 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…
• First GBS|CIDP Bench in Italy
  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.
• Foundation at 2025 AANN Conference!
  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…
• Foundation Co-hosts Open House with Bryn Mawr Rehab
  In July of 2023, the Foundation co-hosted an Open House with Bryn Mawr Rehabilitation Hospital in Malvern, PA.  GBS and CIDP patients in attendance received a guided tour of the facility from the PT and OT’s, as well as a demonstration of adaptive devices and recreational therapies. The feedback from our community has been very…
• Foundation Global Medical Advisory Board statement on COVID vaccines for CIDP and MMN
  No instances of CIDP or MMN were seen during clinical trials of the two vaccines. Neither the Centers for Disease Control and Prevention (CDC) nor the Food and Drug Administration (FDA) recommends against administration of the Covid 19 vaccine in patients with CIDP or MMN. One must keep in mind that the Covid Vaccine has…
• Founder Estelle Benson Named 2018 NORD Honoree for Abbey S. Meyers Leadership Award
  The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th Anniversary Celebration presenting the Rare Impact Awards.
• From Paralysis to Pilgrimage: Walking the Camino de Santiago for Guillain-Barré Awareness
  We’re proud to highlight Lucy, our volunteer from Bulgaria, whose story of resilience continues to inspire. After her own experience with GBS, Lucy has dedicated her time to supporting others in the community and spreading awareness across borders. You can read about the start of her journey in raising awareness here, where she shares how…
• From Paralysis to Purpose
  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…
• From Problem to Promise: Charting a Better Path for CIDP Patients Worldwide
  Principles of Care The Problem: A Patchwork of Care for a Complex Disease Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare and complex neurological disorder that affects patients in Europe and across the globe. However, despite medical advancements, far too many individuals with CIDP experience long, uncertain diagnostic journeys, inconsistent treatment approaches, and fragmented care….
• GBS CIDP Foundation International Earns Coveted 4-Star Rating From Charity Navigator
  Conshohocken, PA (June 2022) – GBS|CIDP Foundation International’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.  This is the 11th consecutive time that GBS|CIDP Foundation International has earned this top distinction. Since 2002, using objective analysis, Charity Navigator has awarded only…
• GBS patient share his story with the New York Post
  Michael Ring, a determined GBS warrior who has turned his personal struggle into an inspiring journey of resilience. Diagnosed with Guillain-Barré Syndrome (GBS), he faced incredible physical challenges that could have ended his marathon dreams. But instead of giving up, he pushed through, reclaiming his strength step by step. Now, he’s sharing his story with…
• GBS Patient, Michael Ring, Interviews with Local TV Station
  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…
• GBS|CIDP Foundation Advocacy Policy
  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|CIDP Foundation Hosts a Virtual Summit
  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,…
• GBS|CIDP Foundation International continues to work with FDA on GBS|CIDP patient concerns
  After holding a GBS Patient Listening session with the FDA in the Summer of 2020, the Foundation has continued to work with key leadership at the FDA to continue bringing the patient voice to their current work. The FDA holds a very special role in the US healthcare system. Their job is to review and…
• GBS|CIDP Foundation Welcomes New Congress & Advocacy Opportunities
  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…
• Global Medical Advisory Board Responds to GBS Outbreak, India
  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…
• Hey doc, are you sure this is CIDP?
  Hey doc, are you sure this is CIDP? By Jeffrey A. Allen MD,University of Minnesota It’s ok to ask the question. Whether you’ve had the diagnosis for a day or a decade its ok to ask. You should ask. Do my symptoms make sense? Are my test results what you would expect for CIDP? Have…
• High School Student Reflects on Foundation Internship
  Every May, the senior class at Germantown Academy is sent off to participate in what is known as “Senior Project”. Each student does something different related to a certain interest of theirs. Each student has a “host” they shadow like a doctor, lawyer, or teacher. I have always been interested in the inner workings of nonprofit organizations. My…
• How Do We Care for the Caregiver?
  How do we care for the caregiver? GBS, CIDP, and variants such as MMN, not only affect patients but can have a huge impact on the entire family. Primary caregivers are so focused on caring for the patient, and often barely have time to notice that their own lives have been turned upside (and sideways)…
• How To Prepare For a Successful Infusion
• In response to CBP preventing Mexican nationals from donating blood plasma
  June 30, 2020 By Lisa Butler, Executive Director GBS|CIDP Foundation International Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder.  Imagine being greeted with the puzzlement…
• Inaugural Bi-Annual Collaborative Workshop
  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…
• Information on Shingrix
  The FDA is committed to safety and transparency for all Americans using any medicine. As a result of their commitment to safety and transparency, the FDA has decided to include GBS on information about the possible side effects of the Shingrix vaccine for shingles, given to older Americans. This safety warning ONLY applies to one…
• Inspiring the Next Generation of Research at the GBS|CIDP Foundation International Patient Symposium  
  As part of the 2023 International Patient Symposium, the Foundation was thrilled to welcome seven young medical professionals – ranging from those in their residency to those finishing their Ph.D. – to join the conference and learn from our Global Medical Advisory Board and from the patient community. These young professionals attended sessions, facilitated Q&A’s,…
• Leadership Collaborative
  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,…
• Life after GBS for Youth and Teens
  By Diana Castro, MD Despite recovery of muscle weakness in most children, many patients experience persistent fatigue, pain and anxiety/depression.  These symptoms can be incapacitating and can affect academic and social development.   The mechanism underlying post-GBS fatigue is unclear.  Fatigue can be secondary to stress and psychological factors.  Other possibilities are deconditioning due to the…
• Medicare B will cover an immunoglobulin therapy for patients with CIDP, starting July 18, 2021
  A message from our industry partners at CSL Behring: We are pleased to share that effective July 18, Hizentra®, Immune Globulin Subcutaneous (Human), 20% Liquid, will be covered under Medicare Part B for maintenance therapy in adults with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).* Under the new coverage, Hizentra will be covered under the same benefit…
• Nancy DiSalvo Interviewed in Rarity Life Magazine; GBS|CIDP Foundation Featured in Two Powerful Articles
  We are proud to share that Nancy DiSalvo, Director of International Affairs at the GBS|CIDP Foundation International, was recently interviewed in Rarity Life magazine, a publication dedicated to elevating the voices of the rare disease community. Her interview, featured in the article “The Importance of Connection,” beautifully reflects the Foundation’s core belief: no one facing GBS, CIDP,…
• Nancy DiSalvo Participates in Neuromuscluar Disease Day, Italy
  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…
• Nature Reviews publishes an article on Guillain–Barré syndrome
  To read the Nature Reviews article on Guillain–Barré syndrome, please click here.
• 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…
• Navigating Insurance Reimbursement in CIDP: Commercial Insurance or Medicare
  Navigating Insurance Reimbursement in CIDP: Commercial Insurance or Medicare Join us as we explore the reimbursement process as it relates to CIDP. These engaging, interactive sessions are tailored to those with either Commercial Insurance or Medicare. Register for your program today! “Navigating Insurance Reimbursement in CIDP: Commercial Insurance” explores the commercial insurance reimbursement process as…
• Neuropathy and Neuropathic Pain, Consider the Alternatives
  Evidence for nutritional interventions, exercise, supplements, acupuncture, and mindfulness-based practices in the treatment of neuropathic pain is encouraging.
• 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
• New Research Grant Announced: Exploring possible role of TGR5 and FXR in autoimmune neuropathy
  Please join us in congratulating, 2019 GBS|CIDP Research Grant Recipient, Betty Soliven, MD for her study: Exploring the possible role of TGR5 and FXR in autoimmune neuropathy Betty Soliven, MD is a Professor and the Associate Chair for Faculty Affairs of the Department of Neurology at the University of Chicago Synopsis There is increasing evidence…
• New Study Reveals No Association Between COVID-19 and Guillain-Barré Syndrome
  A UK based epidemiological study, linked below, has found no causal association between COVID-19 infection and Guillain-Barré syndrome. This means that GBS developing at the same time or close to that of COVID-19 is most likely coincidental.
• New York City Patient Meet-Up
  New York City Patient Meet-Up Wonderful patient and caregiver support meeting in New York City this month! A huge thank you to our dedicated volunteer, Edward Gent, MMN patient, for his hard work in creating a meaningful day of connection and community. We are also deeply grateful to Dr. Brannagan, Dr. Lange, and Dr. Rosenthal for their time…
• NEW! CIDP Financial Assistance Fund
  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…
• NEW! Interdisciplinary Health Committee for GBS, CIDP, and MMN
  In 2025, we established the Interdisciplinary Health Committee for GBS, CIDP, and MMN, a collaborative team of healthcare professionals dedicated to providing comprehensive, patient-centered care for individuals diagnosed with Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Multifocal Motor Neuropathy (MMN). The purpose of this committee is to provide guidance and resources beyond clinical…
• Plasma Awareness Event at Meredith College 
  Written by Ellie Herman, Advocacy Coordinator To recognize International Plasma Awareness Week and educate their community about the need for plasma donations, students and staff at Meredith College in Raleigh, North Carolina held a Project Plasma awareness event on October 4th. Meredith’s Marketing and Communications Office and Student Wellness Organization hosted a tabling event where…
• Please join us in Congratulating 2019 GBS|CIDP Foundation Research Grant Recipient, Dr. Eduardo Nobile-Orazio
  The 2019 GBS|CIDP Foundation Research Grant Recipient is Dr. Eduardo Nobile-Orazio, Associate Professor of  Neurology, at Milan University, and Chair of the Neuromuscular and Neuroimmunology Service at Humanitas Clinical and Research Institute in Rozzano, Milan, Italy.
• Progress in diagnosis and treatment of chronic inflammatory demyelinating polyradiculoneuropathy
  Published in The Lancet, May 7, 2019 Co-authored by Carina Bunschoten, Bart C Jacobs, Peter U K Van den Bergh, David R. Cornblath, Pieter A van Doorn
• Rare Disease Day
  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…
• Rare Disease Event in Agrigento, Italy
  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…
• Research Published on Quality of Life in Inflammatory Neuropathies: the IN-Qol
  In 2008 the GBS|CIDP Foundation awarded a $60,000 to Ingemar S. J. Merkies, MD, PHD Universiteit Maastricht(The Netherlands), Professor Pieter A. van Doorn (GMAB member) Erasmus MC (The Netherlands) and Richard A. Lewis, MD  (GMAB member), Cedars Sinai, for their study in Peripheral Neuropathy Outcome Measures Standardisation (PeriNomS). On February 20, 2018 a paper was…
• Respiratory syncytial virus (RSV)
  Respiratory syncytial virus (RSV) is a highly contagious virus that causes severe respiratory illness, leading to approximately 177,000 hospitalizations and 14,000 deaths annually among adults aged 65 and older [1]. Individuals with weakened immune systems are particularly at risk for severe complications from RSV [2]. RSV vaccines have proven to be highly effective in preventing…
• Results from CME Program: Differentiating GBS & CIDP in a Hospital Setting
  Join us on May 28, 2020 for a panel discussion on Results from CME Program: Differentiating GBS & CIDP in a Hospital Setting.
• September Hill Visit
  In anticipation of the Foundation’s most recent iteration of our Medicare IVIG Access Enhancement Act being introduced in the House of Representatives in the coming days, Foundation staff Chelsey Fix and Ellie Herman went down to Capitol Hill for a day of on-the-ground advocacy. Joined by Health and Medicine Counsel staff, they met with 6…
• Speaker Series Webinar: “Current Treatments and Emerging Trials for GBS, CIDP, and MMN”
  Speaker Series – Episode 12 Summary In this Speaker Series episode, Dr. Jeffery Allen educates us about the current treatments for GBS, CIDP, and MMN as well as explain current trials and their findings. Dr. Allen is an associate professor of neurology at the University of Minnesota, adjunct faculty at Northwestern University, and the chairman…
• Statement regarding GBS alert in Peru
  Statement regarding GBS alert in Peru July 10, 2023 The Foundation and its Global Medical Advisory Board are aware that Peru has issued a statement of emergency due to an increase in cases of Guillain Barre Syndrome. Please know we are here for you and the GBS|CIDP Foundation International is committed to addressing your concerns…
• Subcutaneous Immunoglobulin: A Newly Approved Treatment Option for CIDP
  David Saperstein, MD Co-Director GBS/CIDP Center of Excellence Phoenix Neurological Associates Phoenix, AZ Intravenous immunoglobulin (IVIg) is one of the main therapies used to treat CIDP. This therapy can be very effective but there are drawbacks. Some people experience headaches related to the intravenous infusions. Some people have difficulty with IV access. Also, the need…
• Support for Our California Community Affected by the Wildfires
  “To our family and friends in the community affected by the California wildfires, our hearts and thoughts are with you during this devastating time. If you are living with GBS, CIDP, MMN, or variant conditions and are facing difficulties accessing medical treatment or need support, please do not hesitate to reach out to the Foundation….
• Takeda Introduces Low IgA Immunoglobulin Therapy with GAMMAGARD LIQUID ERC
  On June 30, 2025, Takeda announced that the U.S. Food and Drug Administration approved GAMMAGARD LIQUID ERC, a 10% ready-to-use liquid immunoglobulin therapy. The product is indicated as a replacement therapy for individuals aged two and older with primary immunodeficiency, and it can be administered either intravenously or subcutaneously. Because it’s ready-to-use, it removes the…
• Takeda Receives Positive CHMP Opinion for HYQVIA® as Maintenance Therapy in Patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
  TAKEDA receives positive CHMP opinion for HYQVIA® as maintenance therapy in patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) issued a positive opinion for HYQVIA® as a maintenance therapy for patients with chronic inflammatory demyelinating polyneuropathy (CIDP).  Please find the press release here:  https://www.takeda.com/newsroom/newsreleases/2023/Takeda-Receives-Positive-CHMP-Opinion-for-HYQVIA-as-Maintenance-Therapy-in-Patients-with-Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP/
• Taking Volunteering to the Next Level
  Taking Volunteering to the Next Level The Foundation volunteers are taking volunteering to a whole new level! Don’t miss a chance to tune into what our current volunteers are doing in the community. There is no greater force than like-minds joining together for a common mission to change lives. The Foundation volunteers continue to play…
• The GBS|CIDP Foundation joins the Critical Medicines Alliance
  The Critical Medicines Alliance The GBS|CIDP Foundation International recently joined the Critical Medicines Alliance, an initiative launched by the European Commission for the next 5 years. The objective of the Alliance is “to serve as a consultative body to identify priorities for action and propose solutions to strengthen the supply of critical medicines in the European Union,…
• The urgent need for better treatments for Guillain-Barré Syndrome
  “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/
• Through a Volunteer’s Eyes: The Heart of the 2025 Symposium
  Step inside the 2025 GBS/CIDP Symposium with a volunteer’s eyes — where research and human connection collided in unforgettable ways. Chris Willard shares how patient stories, caregiver voices, and real-world breakthroughs made the gathering feel more like a movement than a conference. From the launch of the new Interdisciplinary Health Committee to moments of vulnerability…
• Tips and Tricks for Traveling
  The Coffee Chat, Tips and Tricks for Traveling, hosted by Foundation staff members Kelly McCoy and Lori Besiege, offered valuable support on how to navigate the challenges that may arise while you are on a plane, train, or bus with a neurological condition that may cause mobility issues. Whether you are traveling to our International…
• Tour de MMN Community Meet-ups
  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…
• Update on COVID-19 Vaccine
  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….
• Vaccines and Guillain Barre Syndrome 2018
  Infections and vaccines have been hypothesized to play a role in triggering the development of GBS. However, in this report, Vaccines and Guillain-Barre syndrome, it is shown that an association between vaccine administration and GBS has never been proven for most of debated vaccines, although it cannot be definitively excluded.
• Volunteer spreads awareness in local hospitals
  There is no greater force than like-minds joining together for a common mission to change lives. The Foundation volunteers continue to play an active role in our community by raising awareness of GBS, CIDP, MMN, and the Foundation resources. Ray Lopez, Boca Raton Liaison, has made it his mission to visit local hospitals and share…
• What is Convalescent Plasma?
  By Dr. David Saperstein Antibodies (also known as immunoglobulins) play an important role in health and illness. Many of you regularly receive intravenous immunoglobulin (IVIG) to treat your autoimmune disease. Flooding a person’s system with antibodies from normal, healthy individuals can reverse problems caused by abnormally overactive immune systems. However, providing antibodies that fight a specific infection can…
• 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…
• Your Donations in Action
  In 2016 The GBS|CIDP Foundation awarded a research grant to Eduardo Nobile-Orazio, MD, PhD, FAAN, Professor of Neurology Neuromuscular and Neuroimmunology Service at Milan University. Dr. Nobile-Orazio’s 2016 study titled: An Italian Multicenter Network for the diagnosis and therapy of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and of its variants, contributed to the 2019 article: Risk factors for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP): antecedent events, lifestyle and dietary habits. Data from the Italian CIDP Database., published by the EAN (European Academy of Neurology). Update: GBS|CIDP Foundation Research 2016 Grant Recipient, Dr. Eduardo Nobil-Orazio, published in Journal of Neurology, Journal of Neuroimmunology, and Wiley Online Library, and EAN.