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• “You Can’t Have a Disorder, You Look So Good” Coffee Chat
  On June 22, 2021, we held our monthly Coffee Chat with over 26 of our members in attendance. The discussion was centered around the theme of “You Can’t Have a Disorder, You Look So Good,” whereby members opened up about the struggles of living a life with an “internal” illness, that is not always visible…
• 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.
• 2020 Symposium Update
  We are working diligently to secure a new official date for the Fall of 2021. An Announcement will be made in the coming weeks with the new Symposium date. We are committed to hosting this event in its full capacity on our new date.
• 2023 Symposium Hill Day
  Sharing Patient Stories on the Hill Written by Ellie Herman, Advocacy Coordinator To kickoff this year’s 2023 International Symposium, the advocacy team brought 60 patients and care partners to Capitol Hill for a day of storytelling and advocacy with our lawmakers. Hill Day participants were divided into 11 teams and interacted with over 30 offices…
• 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 Life and Legacy Dedicated to Research
  On June 10, 2018 the GBS|CIDP Foundation International will be holding its 5th Annual New Jersey Walk & Roll. The event will be chaired by local resident, and Foundation volunteer, Susan Salzmann. Recently we had the pleasure of sitting down with Susan as she shared the complex story of her husband’s personal journey with CIDP….
• A Message of Support from the Foundation Team
  In response to the tragic events this past week, we wanted to share the following thoughts with you, our treasured community. GBS, CIDP, MMN, and all the variants do not discriminate.
• 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…
• 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.
• 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.
• Breaking News in Dallas, TX – Travis Frederick of Dallas Cowboys diagnosed with GBS
  In response to the breaking news in Dallas this morning regarding Travis Frederick of the Dallas Cowboys, and his recent Guillain-Barré Syndrome diagnosis, the GBS|CIDP Foundation International issues the following statements, for those seeking clarity and more information.
• 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…
• 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…
• Celebrating a One Year Anniversary this Rare Disease Day!
  Rare Disease Day 2020 marks a very special anniversary for the entire GBS|CIDP community. The Foundation is pleased to report that is has been one year since the launch of our GBS|CIDP Patient Registry!
• 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…
• CIDP Patient, Lynn Rogers, Running in Chicago Marathon!
  For Rogers, this year has been filled with pain and triumph, a year of repetitive setbacks and remarkable progress. In August 2017, Rogers was paralyzed by a rare autoimmune condition, known as CIDP. Her first steps — at first with the assist of a harness — came a month later. Read more in Chicago Tribune….
• Clovis Walk & Roll Breaks its Own Record!
  The GBS|CIDP Foundation International is delighted to share this important Walk & Roll update! On March 9 at Dry Creek Park in Clovis, California, GBS volunteer and Clovis Walk Chairman, Robert Vasquez hosted yet another exciting Walk & Roll fundraising event with a record-breaking 320 walkers in attendance!  Thus far the event has raised $10,356…
• 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.
• CSL Behring Announces FDA Approval of Privigen®
  CSL Behring Announces FDA Approval of Privigen® [Immune Globulin Intravenous (Human), 10% Liquid] for the Treatment of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in Adults KING OF PRUSSIA, Pa., Sept. 14, 2017 /PRNewswire/ — Global biotherapeutics leader CSL Behring today announced that the U.S. Food and Drug Administration (FDA) has approved Privigen® [Immune Globulin Intravenous (Human), 10% Liquid] for the treatment of…
• DIY Fundraising in a Virtual World
  DIY Fundraising Event COVID-19 has caused all of us to rethink how we get together and socialize with our family and friends. Are you looking for ways to cure your post-holiday blues while making a difference in the GBS│CIDP patient community? We have brainstormed some creative ways you can host a DIY fundraising event in…
• 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. Ken Gorson Discusses GBS on LiveScience.com
  Dr. Ken Gorson, Chairman of GBS|CIDP Foundation’s Global Medical Advisory Board, featured on LiveScience.com this week: Guillain-Barre Syndrome: Causes, Symptoms & Treatments. Read the full article
• 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…
• 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…
• 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.
• GBS CIDP Foundation International Earns Coveted 4-Star Rating From Charity Navigator
  Conshohocken, PA (December 4, 2018) – 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 7th consecutive time that GBS|CIDP Foundation International has earned this top distinction. Since 2002, using objective analysis, Charity Navigator has awarded only…
• 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 Announces Philadelphia Skyline to Illuminate Blue and Green in Honor of GBS|CIDP Awareness Month
  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…
• GBS|CIDP Foundation Granted Membership of the National Health Council (NHC)
  We are pleased to announce that the GBS|CIDP Foundation International has been granted Membership of the National Health Council.
• 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 International Dedicates October to Advocacy “Month of Action”
  [CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, August 31, 2020 This October, The GBS|CIDP Foundation International is encouraging patients and caregivers affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) or variants of the condition such as Multifocal Motor Neuropathy (MMN), to join a virtual “Month of Action” advocacy campaign. Opportunities for participating in “Month…
• GBS|CIDP Foundation International Named 4-Star Charity Navigator Charity for Sixth Consecutive Year!
            Dear Lisa Butler: On behalf of Charity Navigator, I wish to congratulate GBS|CIDP Foundation International on attaining the coveted4-star rating for demonstrating strong financial health and commitment to accountability and transparency. The nonprofit sector is advancing and expanding. As our organizations evolve, so do the desires and interests of our…
• GBS|CIDP Foundation International Named to the 2016 Classy 100
  GBS|CIDP Foundation International Named to the 2016 Classy 100 Recognized as a consistent growing nonprofit on the leading online fundraising platform in 2016   Narberth, Pennsylvania –  GBS|CIDP Foundation International made this year’s Classy 100 list, an annual compilation of the growing nonprofits on Classy, the world’s leading online fundraising platform for social enterprises. Classy…
• GBS|CIDP Foundation staff & patients collaborate with FDA
  By Lisa Butler In 2020 as the Foundation worked with the FDA, for the first time, what I feel is most notable – and praiseworthy –  is their straightforward adherence to science, and their tremendous efforts to bring the patient perspective into the decision-making process. I feel even more confident in the leadership of the…
• Giving Tuesday
  GIVE. #givingtuesday December 1, Giving Tuesday, kicks-off the ultimate season of kindness, hope and caring for our global community. A donation to the Foundation is forever appreciated, but there are so many ways to give, big and small. We ask this year, a year that has brought such unprecedented challenges, that you join us, in…
• 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…
• How Can Participating in a Clinical Trial Help Me? Live Panel
  Join us October 29, 2020 We are pleased to announce a new patient education program about clinical trials for patients with CIDP and GBS, that will air live on October 29th at 12PM ET on NeuroCareLive. Join the multidisciplinary panel comprised of a GBS-CIDP representative, a person who has participated in a clinical trial, and a neurologist in…
• 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)…
• Improving the Recognition of GBS and CIDP in the Hospital Setting: Live Program
  LIVE PROGRAM Designed for healthcare professionals. Earn AMA PRA Category 1 Credit™. Date: Tuesday, September 25, 2018 Time: 12:00 PM – 1:00 PM EST Join our experts for a one-hour, live webinar as they discuss how to manage patients with immune-mediated neuropathies such as GBS and CIDP. Learning Objectives Recognize signs and symptoms that may suggest…
• 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…
• 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…
• Infusion Nurse Joins 2018 Symposium Team of Presenters
  Infusion nurse, Amy Clarke will be joining our roster of 2018 Symposium presenters with a brand new session, All About Infusion. She will be discussing the infusion process from A to Z, and is happy answer all of your questions. You will leave the Symposium feeling informed and comfortable with treatment options, plans and procedures,…
• 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,…
• Join 100 Fundraisers, this August, for the Raise Well 30-day Challenge!
  On August 1, 2020, we will be launching the Raise Well 30-Day Wellness Challenge, a fundraising and wellness challenge open to everyone and anyone. Our goal is to reach 100 participants! We are encouraging fundraisers from around the globe to raise money for GBS|CIDP research, learn and share wellness tips, all while raising awareness for…
• 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…
• May is GBS|CIDP Awareness Month
  May of 2020 has brought unprecedented challenges and changes, the world over. We hope you find comfort in knowing that the GBS|CIDP Foundation has made every effort to continue to Educate our patients in new and innovative ways.
• 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…
• 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 Bill in Congress Aims to Help Improve Access to Home Infusion IVIG for CIDP and MMN Patients, HR 3808
  As a result of the community coming together this year, the Foundation is proud to share the wonderful news that our Congressional champions, led by Congressman Earl Blumenauer, Congressman G.K. Butterfield, and Congressman Chris Smith, have introduced a new bill that aims to help improve coverage of home infusion of IVIG for CIDP and MMN…
• 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! 2020 VIRTUAL SUMMIT – October 3, 2020, 10am-2pm (EST)
  Although our in-person event has been postponed, our plan to offer extraordinary presentations, programs and opportunities to connect, has not! Please join us for our New (FREE) Virtual Summit 2020 on October 3rd, 2020! Mark your calendars for an inspiring LIVE and FREE online event featuring the very same medical & wellness experts that host…
• Now Accepting Applications for 2020 Research Grants
  As part of the GBS|CIDP Foundation International’s mission to provide education and support research, we offer research grants to qualified applicants.
• Pamela Franks Transitions to New Role at the Foundation
  Pamela Franks Transitions to New Role at the Foundation Please join us in congratulating Pamela Franks, as she transitions from Foundation Walk & Roll Manager to her new role as Manager of Volunteer Engagement.  Through the challenges of the past 3 years, Pamela has played a critical role in our Walk & Roll program, enthusiastically…
• 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.
• Press Release: February is Multifocal Motor Neuropathy (MMN) Awareness Month
  [CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, January 24, 2022 February is Multifocal Motor Neuropathy Awareness (MMN) Month. The GBS|CIDP Foundation International will bring focus, research funding, and ways to for patients and caregivers to raise awareness locally as well as connect with others in the MMN worldwide community. An international grassroots fundraising campaign will also…
• 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
• Questions about Multifocal Motor Neuropathy? Save the date!
  On Wednesday, May 20, 2020, at 3 PM ET, head to NeuroCareLive to hear a conversation between medical specialists, advocates, and a patient who lives with MMN. Multifocal Motor Neuropathy (MMN) affects about 1-2 in every 100,000 individuals worldwide. When people develop MMN, their motor nerves are attacked by their immune system. This results in…
• Rare Disease Day 2020
  Giving Hope to our Global Rare Community for #Rarediseaseday Rare Disease Day (RDD) takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year the GBS|CIDP Foundation International has several RDD activities…
• Rare Disease Day 2021
  How will you Show You Care for Rare… this Rare Disease Day? (February 28, 2021) In 2020 the world’s attention turned to public health matters in light of the COVID-19 pandemic, however, there are still millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely…
• Research Poster Opportunity for GBS, CIDP, MMN Patient Symposium
  We Invite You to Participate! As valued members of our medical community, we would like to inform you and your colleagues in training, residents, and fellows of a special opportunity to participate in the 2023 GBS|CIDP Foundation Patient Symposium, October 5-7 in Alexandria, VA. Poster Request Drs. Jeffrey Allen and Bart Jacobs, as Chair and…
• 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…
• 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…
• Special Symposium Discount Extended to September 1, 2018!
  Join Us! November 1-3 2018! Symposium 2018 will feature a wide array of presentations and workshops led by our best medical professionals, and will offer a unique opportunity for those affected by GBS, CIDP, and variants to meet with other patients and families from around the world. Register Now
• 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…
• 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…
• Tell Congress Why Plasma Is Essential
  For many people, IVIG and SCIG is an amazing, life-saving medication! IVIG and SCIG are immunoglobulin therapies created from source plasma. Source plasma is donated from healthy volunteers at one of many plasma collection centers across the country. People who donate plasma are everyday heroes and we thank them for their time and contribution!  Currently,…
• 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,…
• 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…
• 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…
• Welcome to Fall Advocacy
  Congressional Recess officially ended on September 9th, and the Northeast is already seeing leaves fall from the trees (no color change, yet). Now that Washington, D.C. is back to being fully operational, we have a lot of great things to report on! Check out our highlights below, and stay up to date with all things…
• Welcome, New Congress!
  As we kicked off 2021 full of hope for the future, we also welcomed a new Congress to Capitol Hill. The 117th Congress first convened on January 3, 2021, and now that they are settled in, we believe it is time for the GBS|CIDP and variants community to reach out and introduce our Representative and…
• 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.