The GBS|CIDP Foundation is committed to sharing the most accurate information from the world’s leading experts, many from our Global Medical Advisory Board. The COVID-19 situation changes daily and we will continue to share updates that are vetted by the experts in GBS. In addition, we are in regular contact with the FDA representing the patient voice in the top-level decision-making. We understand that there are many opinions creating confusion so please consider the source of your information before drawing conclusions. As always, all decisions should be made with your personal physician based on your own health. The information below is the most up to date available on Covid-19, vaccines, and the GBS|CIDP Community
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GMAB Statement on Vaccine Boosters and the GBS|CIDP Community
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 third COVID19 vaccine dose. There has been much discussion about third shots or “booster shots” of certain COVID19 vaccines for individuals…
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Pfizer-BioNTech COVID-19 Vaccine for children ages 5 through 11 years
On October 29, 2021, the U.S. Food and Drug Administration authorized the emergency use of the Pfizer-BioNTech COVID-19 Vaccine for the prevention of COVID-19 to include children ages 5 through 11 years. The vaccine was studied in approximately 3,100 children aged 5 through 11, without reported serious side effects. No cases of myocarditis occurred during…
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Global Medical Advisory Board (GMAB) Statement on Vaccines
COVID19 vaccines are different from flu vaccines. We are not seeing evidence that COVID19 vaccines are more likely to cause GBS, even in individuals who have had GBS brought on by other vaccines. Therefore, we do not see prior GBS as a reason not to get a COVID19 vaccine.
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Rate of Recurrent Guillain-Barré Syndrome After mRNA COVID-19 Vaccine
Read the full article, Rate of Recurrent Guillain-Barré Syndrome After mRNA COVID-19 Vaccine BNT162b2, (Jama Neurology).
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Third dose of Vaccination for Immune Suppressed Patients
Third dose of Vaccination for Immune Suppressed Patients August 19, 2021 A statement from our Global Medical Advisory Board On August 12th, the FDA authorized that a third dose of COVID-19 mRNA vaccines (Pfizer and Moderna) may be given to patients who are moderately or severely immunocompromised. Patients who are considered immune-suppressed are those who…
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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…
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Statement on Vaccines and GBS
Statement on Vaccines and GBS June 18, 2021 There is no evidence at the present time to suggest that ANY of the vaccines is associated with GBS in any significant numbers (with data only on AZ, Pfizer and Moderna from the UK). Multiple international surveillance systems are looking specifically for GBS as it is designated…
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Ask The Experts Episode 9 – COVID-19 Vaccines and the GBS|CIDP Community
Ask The Experts Episode 9 – COVID-19 Vaccines and the GBS|CIDP CommunityFeaturing Dr. Peter Donofrio, Chairman of the Global Medical Advisory Board
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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.
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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…
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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…
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Persons who have previously had GBS may receive an mRNA COVID-19 vaccine
Adults of any age with certain underlying medical conditions are at increased risk for severe illness from the virus that causes COVID-19. mRNA COVID-19 vaccines may be administered to people with underlying medical conditions provided they have not had a severe allergic reaction to any of the ingredients in the vaccine. The following information aims to help people in the…
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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…
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FDA approved package insert for Pfizer-Biontech COVID-19 vaccine, no mention of GBS as risk
This information is a public document and has been forwarded to the Foundations by our key opinion leaders in the GBS medical community. Of note, there is no mention of GBS in the vaccine insert, not as a risk nor as a vaccine to avoid for those who have had GBS or CIDP or are…
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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…
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Statement from Professor Lunn in Reference to Newest Research on COVID-19, GBS, and Vaccines
In reaction to recent research published in Brain (click here to read more), Professor Lunn has offered this guidance in regards to our community.
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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.
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APLUS Statement on the State of Plasma
The American Plasma Users Coalition (APLUS) recognizes and applauds the recent statements from the White House that emphasize the importance of plasma and how essential plasma donors are to the healthcare system. This statement rings true for convalescent plasma that may help countless patients battling COVID-19 and is especially true for people all over the…
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Wrap Up With A Win – Awareness Month’s Advocacy Week Brings Legislative Victories
Our 2020 May Awareness Month went digital this year, but that did not stop nearly 100 advocates across the US from participating in virtual advocacy through the Advocacy Action Center. THANK YOU to everyone who took the time to create a letter for Members of Congress. Together, we make our voices heard by lawmakers and…
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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.
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Covid19, Ask the Expert
COVID-19 Ask the Experts with Dr. Ken Gorson, part of our educational series featuring medical experts from the Foundation’s Global Medical Advisory Board.
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The COVID-19 Rare Disease Critical Needs Non-Medical Assistance Fund from The National Organization of Rare Disorders
The National Organization of Rare Disorders (NORD) launched a COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the current pandemic. The program provides financial relief that may be utilized to support critical, non-medical needs. The COVID-19 Critical Needs Non-Medical Assistance Fund provides eligible individuals impacted by the…
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Grifols Announces Formal Collaboration with US Government to Produce the First Treatment Specifically Targeting COVID-19
Grifols Announces Formal Collaboration with US Government to Produce the First Treatment Specifically Targeting COVID-19
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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…
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Global Plasma Leaders Collaborate to Accelerate Development of Potential COVID-19 Hyperimmune Therapy
Partnership brings together world-leading plasma companies to focus on developing and delivering a hyperimmune immunoglobulin in the global fight against COVID-19.
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Work Continues for CSL Behring During the Pandemic
Patient groups praise U.S. guidelines that designate plasma centers, manufacturing sites as essential. See full article
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Update on Home Infusion & Medicare During COVID-19 Pandemic
Earlier this week, the Center for Medicare and Medicaid Services (CMS) released new guidelines for the coverage of home infusion during the COVID-19 pandemic. The new guidelines allow for more flexibility for patients and their physicians to decide the best setting for ongoing treatments. Given your current situation, you may be able to access home…
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#ItsMyTurn
In partnership with Immunoglobulin National Society, we encourage our community to join the #ItsMyTurn campaign. This campaign encourages people who are able, to take action that directly impacts the patients we serve, by donating plasma! How Do I Donate and Join the Campaign? Locate your nearest Plasma Donation Center Donate plasma. Take a picture or a…
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NHC Webinar – Coronavirus Preparedness for People with Chronic Diseases, What Caregivers Need to Know
COVID-19 is causing significant concerns globally. Watch a recording of this March 27 Webinar produced by the National Health Council, for caregivers of patients with chronic diseases. The webinar discusses how caregivers can best avoid the illness and care for themselves while also helping those who are not well. https://nationalhealthcouncil.org/coronavirus-preparedness-for-people-with-chronic-diseases-what-do-caregivers-need-to-know/
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Advocating for Plasma Donations and Home Infusion
The GBS|CIDP Foundation International recently led the American Plasma Users Coalition (APLUS) in creating a letter to federal and state agencies regarding two important topics to our community: plasma donations and home infusion. The Foundation and APLUS want to make sure that lawmakers are aware that plasma collection centers are considered “essential” according to the…
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COVID-19 FAQ from GBS|CIDP & Variant Community
Informing our GBS|CIDP Foundation community is our top priority. This week we have received a number of questions regarding COVID-19 through email, phone calls, and our social media channels. Two of the primary concerns are addressed below. The answers are provided by the GBS|CIDP Foundation International Global Medical Advisory Board. As we continue to navigate…
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Update on Coronavirus (COVID-19) – March 19th
Dear GBS|CIDP Community, We know that this is a challenging time for everyone as the news of the pandemic is evolving each day. Please know we are here for you and the GBS|CIDP Foundation International is committed to addressing your concerns as accurately and efficiently as possible. A number of our members have reached out…
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NHC Webinar – Coronavirus Preparedness for People with Chronic Diseases Webinar
COVID-19 is causing significant concerns globally. Watch a recording of this March 13 Webinar produced by the National Health Council, for patients with chronic diseases. The webinar discusses how patients can best avoid the illness, and what to do if they feel sick. Watch Webinar here or visit NHC website for more information.
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A Statement from Executive Director, Lisa Butler, with regard to COVID-19 and Planning Ahead
We are all in this together, and the GBS|CIDP Foundation International will make every effort to keep our community informed and updated.
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Resource from PPTA Regarding COVID-19
The Plasma Protein Therapeutics Association (PPTA) has provided a statement specific to plasma protein therapies in light of the COVID-19 pandemic. CLICK HERE to read the statement. The PPTA notes that their Pathogen Safety Steering Committee continues to monitor the situation and is currently working on a broader update for the community. We will share these…
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A statement from the GBS|CIDP Foundation regarding the COVID-19
The coronavirus COVID-19 situation is evolving rapidly. In the interest of concerns and questions that the Foundation is receiving regarding the spread of the coronavirus COVID-19, the GBS|CIDP Global Medical Advisory Boards offers the following statement: GBS, CIDP and variants will not put patients at any higher risk of contracting the COVID-19, but those who…
