Foundation News

Rare Disease Day 2021

How will you Show You Care for Rare… this Rare Disease Day? (February 28, 2021) In 2020 the world’s attention turned to public health matters in light of the COVID-19 pandemic, however, there are still millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely…

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DIY Fundraising in a Virtual World

DIY Fundraising Event COVID-19 has caused all of us to rethink how we get together and socialize with our family and friends. Are you looking for ways to cure your post-holiday blues while making a difference in the GBS│CIDP patient community? We have brainstormed some creative ways you can host a DIY fundraising event in…

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Persons who have previously had GBS may receive an mRNA COVID-19 vaccine

Adults of any age with certain underlying medical conditions are at increased risk for severe illness from the virus that causes COVID-19. mRNA COVID-19 vaccines may be administered to people with underlying medical conditions provided they have not had a severe allergic reaction to any of the ingredients in the vaccine. The following information aims to help people in the…

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FIRST Teen & Young Adult Zoom Chat

By Meg Mains The GBS-CIDP Foundation International hosted their FIRST Teen & Young Adult Zoom gathering on December 8th. It was a great way to meet other patients and share their experiences with GBS, CIDP, & variant conditions. Meg Mains, Youth, Teen, & Young Adult Team Lead, and Michael Coleman, YTA Spokesperson hosted the virtual…

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An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH

(Please see the following open letter statement authored by members of the GBS|CIDP Foundation International medical community as referenced.) As clinician/scientists who have spent careers studying GBS, we are concerned that your statement on the “New Normal” television show about GBS and the COVID vaccine will have unintended consequences. Your statement is already all over…

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GBS|CIDP Foundation staff & patients collaborate with FDA

By Lisa Butler In 2020 as the Foundation worked with the FDA, for the first time, what I feel is most notable – and praiseworthy –  is their straightforward adherence to science, and their tremendous efforts to bring the patient perspective into the decision-making process. I feel even more confident in the leadership of the…

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Giving Tuesday

GIVE. #givingtuesday December 1, Giving Tuesday, kicks-off the ultimate season of kindness, hope and caring for our global community. A donation to the Foundation is forever appreciated, but there are so many ways to give, big and small. We ask this year, a year that has brought such unprecedented challenges, that you join us, in…

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2018 GBS|CIDP Foundation Research Grant Recipient Publishes Update in Journal of Neurology, Neurosurgery & Psychology

CSF sphingomyelin: a new biomarker of demyelination in the diagnosis and management of CIDP and GBS Principal Investigators: Luana Benedetti, MD, PhD  and  Lucilla Nobbio, PhD, University of Genova, ITALY CIDP and GBS are immune-mediated neuropathies characterized by strong heterogeneity in terms of clinical manifestations, prognosis and response to treatment. They are treatable diseases and early…

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Foundation Hosted Patient Listening Session on Guillain-Barre Syndrome with The FDA

On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and…

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Pagination