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…
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…
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…
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…
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.
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…
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).
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…
“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…
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…
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…
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…
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,…
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…
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…