Foundation News

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…

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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…

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“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…

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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…

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Navigating Insurance Reimbursement in CIDP: Commercial Insurance

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” is live on Thursday, August 19, 2021, at 12:15 PM EDT.  This session will explore the…

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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…

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Live Webinar! CIDP: Improving Timely Diagnosis, Assessment, and Treatment (For Physicians Only)

Live Date: August 5, 2021 Time: 11:30am ET Program Expiration: August 5, 2022 While chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is the most common of the acquired immune-mediated demyelinating neuropathies, it remains a challenge to differentiate it from other immune-mediated inflammatory conditions. Clinicians may also find it difficult to recognize atypical presentations of CIDP. These issues…

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Live Webinar! Becoming Empowered with CIDP: Making My Voice Heard

We are pleased to announce a new, live video education session: “Becoming Empowered with CIDP: Making My Voice Heard” live on Thursday, August 5, 2021 at 10:00 AM ET.  An expert panel of neurology and pharmacy clinicians, as well as a patient with CIDP, will discuss the disease and review the questions every patient should…

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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,…

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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…

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