Christopher Cross Research Fund
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COVID-19 Vaccines and the GBS|CIDP Community
The GBS|CIDP Foundation has received many questions about COVID-19 and its relationship to Guillain-Barré syndrome and CIDP.
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…
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…
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)…
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…
GBS|CIDP Foundation International continues to work with FDA on GBS|CIDP patient concerns
After holding a GBS Patient Listening session with the FDA in the Summer of 2020, the Foundation has continued to work with key leadership at the FDA to continue bringing the patient voice to their current work. The FDA holds a very special role in the US healthcare system. Their job is to review and…
This March, challenge yourself to 31 days of wellness activities, while raising funds for GBS|CIDP research too!
On March 1, 2021, we will be launching the Raise Well 31-Day Wellness Challenge, a fundraising and wellness challenge open to everyone and anyone. Our goal is to reach 100 participants! We are encouraging fundraisers from around the globe to raise money for GBS|CIDP research, learn and share wellness tips, all while raising awareness for…
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…
Foundation Global Medical Advisory Board statement on COVID vaccines for CIDP and MMN
No instances of CIDP or MMN were seen during clinical trials of the two vaccines. Neither the Centers for Disease Control and Prevention (CDC) nor the Food and Drug Administration (FDA) recommends against administration of the Covid 19 vaccine in patients with CIDP or MMN. One must keep in mind that the Covid Vaccine has…
Dr. A.S. Fauci Corrects Previous Statement Regarding COVID-19 Vaccines & GBS
As a follow up to the Foundation’s published article from Dec. 20, 2020, “An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH,” on January 15, 2021, Neurology Today published the following article “No Excess Risk for Neurologic Events Observed to Date from COVID-19 Vaccines.” Read the full article…
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…
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…
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…
New Study Reveals No Association Between COVID-19 and Guillain-Barré Syndrome
A UK based epidemiological study, linked below, has found no causal association between COVID-19 infection and Guillain-Barré syndrome. This means that GBS developing at the same time or close to that of COVID-19 is most likely coincidental.