Foundation News

FDA Has Approved New Treatment Options for CIDP Patients

FDA has approved both Takeda’s HYQVIA, a new maintenance therapy for patients with CIDP, and GAMMAGARD LIQUID®. The Foundation advocates for access to all products at all points of care. As always, the Foundation recommends consulting with your physician when exploring new treatment options.   More information at our HYQVIA Treatment and Access Page: https://www.gbs-cidp.org/treatments-access/takeda/ Approval…

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CIDP Education Session – Now Available On Demand

Diagnosed with CIDP: Shared Decision-Making Approach to Care and a Treatment Option for Adults Join us for an enlightening online presentation on Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) now available to watch on demand. Lisa Butler, Executive Director of the GBS|CIDP Foundation International, moderates this panel discussion featuring 2 doctors with expertise in CIDP and Jon,…

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[On Demand Webinar] Living With Multifocal Motor Neuropathy (MMN)? Why Your Participation in Trials Matters!

Now Available on Demand Join a neurologist, patient advocate and person with MMN for our on-demand webinar: Living With Multifocal Motor Neuropathy? Why Your Participation in Trials Matters! You will learn how observational, investigational, and clinical trials can benefit people with MMN. Plus, you will find out how you can enroll in specific ongoing trials….

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Foundation Welcomes New International Affairs Director

New International Affairs Director Please join us in welcoming Nancy Di Salvo to the GBS|CIDP Staff as our new International Affairs Director! A tireless international volunteer for the GBS|CIDP community since 2013 and a Board Member since 2019, Nancy has educated and supported numerous patients worldwide. We look forward to having Nancy join our staff,…

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Takeda Receives Positive CHMP Opinion for HYQVIA® as Maintenance Therapy in Patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

TAKEDA receives positive CHMP opinion for HYQVIA® as maintenance therapy in patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) issued a positive opinion for HYQVIA® as a maintenance therapy for patients with chronic inflammatory demyelinating polyneuropathy (CIDP).  Please find the press release here:  https://www.takeda.com/newsroom/newsreleases/2023/Takeda-Receives-Positive-CHMP-Opinion-for-HYQVIA-as-Maintenance-Therapy-in-Patients-with-Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP/

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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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