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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GMAB Statement on Vaccine Boosters and the GBS|CIDP Community

This statement is provided by the GBS|CIDP Foundation Global Medical Advisory Board.  We also encourage you to contact your healthcare provider about whether it would be a good idea for you to have a third COVID19 vaccine dose. There has been much discussion about third shots or “booster shots” of certain COVID19 vaccines for individuals…

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Live Webinar! Living with Multifocal Neuropathy (MMN)

Live Webinar! Living with Multifocal Neuropathy (MMN) February 24th, 2022 1:00PM – 2:00PM EST Program Description: The GBS|CIDP Foundation International, in collaboration with PlatformQ, is pleased to announce a LIVE program highlighting Multifocal Motor Neuropathy (MMN), sponsored by Takeda. In this program, you will learn more about recognizing and coping with the condition of MMN,…

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February, Multifocal Motor Neuropathy(MMN) Awareness Month

February is Multifocal Motor Neuropathy(MMN) Awareness Month MMN (Multifocal Motor Neuropathy) is a rare disorder in which focal areas of multiple motor nerves are attacked by one’s own immune system. Typically, MMN is slowly progressive, resulting in asymmetrical weakness of a patient’s limbs. The clinical course of MMN is chronically progressive without remission and the…

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Pfizer-BioNTech COVID-19 Vaccine for children ages 5 through 11 years

On October 29, 2021, the U.S. Food and Drug Administration authorized the emergency use of the Pfizer-BioNTech COVID-19 Vaccine for the prevention of COVID-19 to include children ages 5 through 11 years.  The vaccine was studied in approximately 3,100 children aged 5 through 11, without reported serious side effects. No cases of myocarditis occurred during…

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Global Medical Advisory Board (GMAB) Statement on Vaccines

COVID19 vaccines are different from flu vaccines. We are not seeing evidence that COVID19 vaccines are more likely to cause GBS, even in individuals who have had GBS brought on by other vaccines. Therefore, we do not see prior GBS as a reason not to get a COVID19 vaccine. 

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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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Pagination