Foundation News

CIDP Clinical Trial

A Phase 2b, Multi-center, Randomized, Quadruple-blind, Placebo-controlled Study of Batoclimab Treatment in Adult Participants With Active Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) sponsored by IMMUNOVANT The IMVT-1401-2401 study wants to learn more about the safety and effectiveness of an investigational drug called batoclimab to see if it could help CIDP patients manage their symptoms. Batoclimab is given by a simple…

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Call on Airlines to Respect People with Rare Conditions and their Medical Equipment

The GBS|CIDP Foundation International acknowledges the urgent need for airlines to respect and improve their treatment of people with rare conditions and their medical equipment while at airports and flying. Too often, mobility devices, wheelchairs, and other medical equipment are mishandled or damaged by airline staff due to neglectful treatment and a lack of understanding…

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2023 Symposium Hill Day

Sharing Patient Stories on the Hill Written by Ellie Herman, Advocacy Coordinator To kickoff this year’s 2023 International Symposium, the advocacy team brought 60 patients and care partners to Capitol Hill for a day of storytelling and advocacy with our lawmakers. Hill Day participants were divided into 11 teams and interacted with over 30 offices…

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GBS Patient Completes his 7th Marathon

Michael was diagnosed with GBS nine and a half years ago as he was getting ready to complete his 30th full marathon. Instead of running, he stumbled into his doctor’s office and was told to go straight to the hospital. At that moment, Michael didn’t realize the events that would unfold in the 135 days…

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Adults with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Family Caregivers Needed

Listed by: Interface Analysis Associates LLC Who is Eligible? About the Study Compensation – Time Commitment Interested in Participating? Contact our recruiters: About Interface Analysis Associates LLC. (IAA) IAA is a leading consumer healthcare research firm led by Dr. Anthony Andre, Ph. D, CDE. IAA has been in business for 30 years performing non-invasive simulated…

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Inspiring the Next Generation of Research at the GBS|CIDP Foundation International Patient Symposium  

As part of the 2023 International Patient Symposium, the Foundation was thrilled to welcome seven young medical professionals – ranging from those in their residency to those finishing their Ph.D. – to join the conference and learn from our Global Medical Advisory Board and from the patient community. These young professionals attended sessions, facilitated Q&A’s,…

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Plasma Awareness Event at Meredith College 

Written by Ellie Herman, Advocacy Coordinator To recognize International Plasma Awareness Week and educate their community about the need for plasma donations, students and staff at Meredith College in Raleigh, North Carolina held a Project Plasma awareness event on October 4th. Meredith’s Marketing and Communications Office and Student Wellness Organization hosted a tabling event where…

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UnitedHealthcare dropping four immunoglobulin products from formulary

UnitedHealthcare (UHC), a private insurance company that provides health insurance to more than 25 million Americans nationwide, will be dropping four immunoglobulin (Ig) products from its formulary on October 1, 2023: Asceniv, Cuvitru, Cutaquig, and Panzyga. These formulary changes will affect individual UnitedHealthcare plans (i.e., those obtained through a marketplace) except in Massachusetts, Nevada, and New York. It is…

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September Hill Visit

In anticipation of the Foundation’s most recent iteration of our Medicare IVIG Access Enhancement Act being introduced in the House of Representatives in the coming days, Foundation staff Chelsey Fix and Ellie Herman went down to Capitol Hill for a day of on-the-ground advocacy. Joined by Health and Medicine Counsel staff, they met with 6…

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Tips and Tricks for Traveling

The Coffee Chat, Tips and Tricks for Traveling, hosted by Foundation staff members Kelly McCoy and Lori Besiege, offered valuable support on how to navigate the challenges that may arise while you are on a plane, train, or bus with a neurological condition that may cause mobility issues. Whether you are traveling to our International…

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ARDA Multifocal Motor Neuropathy Study Clinical Trial

ARDA Multifocal Motor Neuropathy Study The ARDA study is designed to assess the safety and effectiveness of the investigational study drug compared to a placebo for the treatment of adults living with MMN. Participants enrolled in the study will be randomly assigned by a computer to either receive the investigational drug or a placebo. Participants…

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International Guillain-Barré Syndrome Outcome Study (IGOS) Clinical Trial

International Guillain-Barré Syndrome Outcome Study (IGOS) The international GBS Outcome Study (IGOS) is the largest and longest prospective trial designed to collect extensive data from patients afflicted with GBS in a systematic manner. The aim is to collect information from patients by intensive international collaboration. All patients are followed at standard intervals from the earliest…

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Clinical Study of ANX005 and IVIG

A Clinical Study of ANX005 and IVIG in Subjects with Guillain Barré Syndrome (GBS) A Phase 1b Study to Evaluate the Safety, Tolerability and Drug-Drug Interactions of ANX005 and Intravenous Immunoglobulin (IVIg) in Subjects With Guillain Barré Syndrome CLICK HERE FOR MORE INFORMATION ON THE CURRENT TRIAL VIA CLINICALTRIALS.GOV

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CIDP Clinical Trial

Open-Label Phase 2 study with SAR445088, a Complement C1s inhibitor, in adults with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), sponsored by Sanofi This global multicenter study will evaluate the efficacy, safety and tolerability of SAR445088 in CIDP. SAR445088 (previously known as BIVV020) is an investigational monoclonal antibody that targets Complement C1s and has a subcutaneous route…

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Pediatric CIDP Clinical Trial

Randomized Study of Single vs. Multiple Privigen Dose Regimens in Pediatric CIDP CSL Behring is conducting an open-label study to investigate the efficacy of single and multiple-dose Privigen administration in IVIG‑pretreated and IVIG-untreated pediatric subjects with chronic inflammatory demyelinating polyneuropathy (CIDP). ClinicalTrials.gov Identifier: NCT03684018 CLICK HERE FOR MORE INFORMATION ON THE CURRENT TRIAL VIA CLINICALTRIALS.GOV

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Pagination