Foundation News

Information on Shingrix

The FDA is committed to safety and transparency for all Americans using any medicine. As a result of their commitment to safety and transparency, the FDA has decided to include GBS on information about the possible side effects of the Shingrix vaccine for shingles, given to older Americans. This safety warning ONLY applies to one…

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Coping with School & Treatment Plan for GBS|CIDP

By Megan Kaump A diagnosis of GBS, CIDP, or variants is frightening and devastating for anyone, but when a child is diagnosed it adds a very different set of emotions and experiences. It is heart- breaking to see your child go through such challenges and there is the added component of how the child’s schooling…

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How Do We Care for the Caregiver?

How do we care for the caregiver? GBS, CIDP, and variants such as MMN, not only affect patients but can have a huge impact on the entire family. Primary caregivers are so focused on caring for the patient, and often barely have time to notice that their own lives have been turned upside (and sideways)…

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Welcome, New Congress!

As we kicked off 2021 full of hope for the future, we also welcomed a new Congress to Capitol Hill. The 117th Congress first convened on January 3, 2021, and now that they are settled in, we believe it is time for the GBS|CIDP and variants community to reach out and introduce our Representative and…

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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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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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