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.
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…
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…
Hey doc, are you sure this is CIDP?
By Jeffrey A. Allen MD,University of Minnesota It’s ok to ask the question. Whether you’ve had the diagnosis for a day or a decade its ok to ask. You should ask. Do my symptoms make sense? Are my test results what you would expect for CIDP? Have other explanations been explored? Should I get a…
How Can Participating in a Clinical Trial Help Me? Live Panel
Join us October 29, 2020 We are pleased to announce a new patient education program about clinical trials for patients with CIDP and GBS, that will air live on October 29th at 12PM ET on NeuroCareLive. Join the multidisciplinary panel comprised of a GBS-CIDP representative, a person who has participated in a clinical trial, and a neurologist in…
GBS|CIDP Foundation International Dedicates October to Advocacy “Month of Action”
[CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, August 31, 2020 This October, The GBS|CIDP Foundation International is encouraging patients and caregivers affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) or variants of the condition such as Multifocal Motor Neuropathy (MMN), to join a virtual “Month of Action” advocacy campaign. Opportunities for participating in “Month…
Dr. Peter Donofrio, Chairman, Global Medical Advisory Board, GBS|CIDP Foundation International, Receives AANEM Distinguished Physician Award
The American Association of Neuromuscular and Electrodiagnostic (AANEM) has awarded the 2020 Distinguished Physician Award to Peter Donofrio, MD, for his distinguished service as a clinician, educator and his overall support of AANEM.
Your Donations in Action
In 2016 The GBS|CIDP Foundation awarded a research grant to Eduardo Nobile-Orazio, MD, PhD, FAAN, Professor of Neurology Neuromuscular and Neuroimmunology Service at Milan University. Dr. Nobile-Orazio’s 2016 study titled: An Italian Multicenter Network for the diagnosis and therapy of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and of its variants, contributed to the 2019 article: Risk factors for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP): antecedent events, lifestyle and dietary habits. Data from the Italian CIDP Database., published by the EAN (European Academy of Neurology). Update: GBS|CIDP Foundation Research 2016 Grant Recipient, Dr. Eduardo Nobil-Orazio, published in Journal of Neurology, Journal of Neuroimmunology, and Wiley Online Library, and EAN.
Announcing 4 New Centers of Excellence, including first in Pediatric Care
Our Global Medical Advisory Board has set standards for what they consider to be excellent medical centers for the diagnosis and treatment of GBS and CIDP, MMN and related neuropathies. Based on levels of expertise, available treatments, facilities, and research capabilities, these are the medical centers that we can unequivocally recommend as “Centers of Excellence”….