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…
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…
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…
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…
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…
This March, challenge yourself to 31 days of wellness activities, while raising funds for GBS|CIDP research too!
On March 1, 2021, we will be launching the Raise Well 31-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…
Foundation Hosted Patient Listening Session on Guillain-Barre Syndrome with The FDA
On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and…
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!
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…
It’s the Most __________Time of the Year
The 2019 Holiday Season is upon us. This means that it’s a wonderful time for some and stressful time for others.
Update from the International Guillain–Barré Syndrome Outcome Study (IGOS)
Diagnosis and management of Guillain–Barré syndrome in ten steps Portuguese Spanish Chinese Nature Reviews Neurology: https://www.nature.com/articles/s41582-019-0250-9; Published Sept 20, 2019. Explanation of the above referenced article below.https://creativecommons.org/licenses/by/4.0/ Authors: Sonja Leonhard, Melissa Mandarakas, Francisco de Assis Aquino Gondim, Kathleen Bateman, Maria Lúcia Ferreira, David Cornblath, Pieter van Doorn, Mario Dourado, Richard Hughes, Badrul Islam, S Kusunoki, Carlos Pardo, Ricardo Reisin, Jim…
Treatment Options for Patients with CIDP
Free online program for patients and caregivers Date: Wednesday, December 11, 2019 Time: 3:00 PM – 4:15 PM ET (Support for this patient education program provided by Grifols and coproduced with NeuroCareLive) Intravenous immunoglobulin (IVIG) is a treatment for Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Over the course of several hours, naturally occurring antibodies from healthy…