Foundation News

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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16th Biennial Patient Symposium

Join us on October 20-22, 2022 in sunny Ponte Vedra, Florida!  The Sawgrass Marriott Golf Resort & Spa will be our home for the weekend! With extraordinary amenities and a terrific location, Sawgrass Marriott Golf Resort & Spa offers an unforgettable destination for work and play. You’ll find our hotel in Ponte Vedra Beach, just…

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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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“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…

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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…

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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…

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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,…

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Angela’s Adaptive Devices

Written by Angela Patton Angela Patton is a member of GBS|CIDP’s Advisory Committee. In 2017, after an eight months struggle for a proper diagnosis, Angela was diagnosed with CIDP.  Here is Angela’s story… I was barely able to walk, and struggled during this time in my educational, and professional life. I have been on various…

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Patients, Caregivers Connect for June Coffee Chat

Everyone has different ways of coping with GBS, CIDP and variants, and it can definitely be a struggle when you look completely healthy on the outside. Some people will certainly be judgmental at times, not understand the severity of the disease or even in some cases think that the person is exaggerating their symptoms. With…

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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…

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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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Pagination