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…
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…
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…
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…
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…
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…
Christopher Cross Research Fund
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