Foundation News

2022 GBS|CIDP Awareness Month

May is GBS|CIDP Awareness Month May is GBS|CIDP Awareness Month around the world!  This year we spreading awareness and support through new and innovative programming, including the Be the Bridge Awareness Campaign directed to Healthcare Professionals. Additionally we are launching a New Advocacy Training series, and an Ask the Expert Presentation, you will not want…

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Sanofi Clinical Trial – CIDP Patients

 A Phase 2 clinical study in adult patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Sanofi is currently recruiting patients to evaluate effectiveness and safety of a new investigational medicine called “SAR445088” for the treatment of CIDP. SAR445088 is a monoclonal antibody with a new mechanism of action as it targets the complement system directly. All…

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Social Media Ask the Experts

What we learned from January, Social Media Ask the Experts On January 20, 2022, the GBS|CIDP Foundation International sat down with Hannah Joya and Melody Olander for Episode 13 of our Ask the Experts Series, “Let’s Get Social,” to discuss their involvement in the GBS, CIDP community and specifically the role that social media plays…

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Announcing 2022 Benson Fellowship Awardee

Announcing 2022 Benson Fellowship Awardee, Elba Pascual Goñi MD, PhD The Benson Fellowship is a three-year fellowship that provides an opportunity for scientists to engage in peripheral nerve of study. The Fellowship provides funds of up to $150,000 for three years, but only one Benson fellowship is awarded every three year period. We are pleased…

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Press Release: 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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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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Third dose of Vaccination for Immune Suppressed Patients

Third dose of Vaccination for Immune Suppressed Patients August 19, 2021 A statement from our Global Medical Advisory Board On August 12th, the FDA authorized that a third dose of COVID-19 mRNA vaccines (Pfizer and Moderna) may be given to patients who are moderately or severely immunocompromised.  Patients who are considered immune-suppressed are those who…

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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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Pagination