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…
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…
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…
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…
FDA approved package insert for Pfizer-Biontech COVID-19 vaccine, no mention of GBS as risk
This information is a public document and has been forwarded to the Foundations by our key opinion leaders in the GBS medical community. Of note, there is no mention of GBS in the vaccine insert, not as a risk nor as a vaccine to avoid for those who have had GBS or CIDP or are…
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…
Statement from Professor Lunn in Reference to Newest Research on COVID-19, GBS, and Vaccines
In reaction to recent research published in Brain (click here to read more), Professor Lunn has offered this guidance in regards to our community.
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.