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SpanishIn response to CBP preventing Mexican nationals from donating blood plasma
June 30, 2020 By Lisa Butler, Executive Director GBS|CIDP Foundation International Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder. Imagine being greeted with the puzzlement…
An Update from the International Guillain-Barre Study (IGOS) by Dr. Bart Jacobs
The IGOS-1000 cohort has now been tested for the main preceding infections and is currently tested for antibodies extensively. We have also recently finalized a study in IGOS on the association between GBS and SARS-CoV-2 during the first 3 months of the pandemic. In my view this study shows the importance of having an ongoing…
Statement on Vaccines and GBS
Statement on Vaccines and GBS June 18, 2021 There is no evidence at the present time to suggest that ANY of the vaccines is associated with GBS in any significant numbers (with data only on AZ, Pfizer and Moderna from the UK). Multiple international surveillance systems are looking specifically for GBS as it is designated…
NEW Bill in Congress Aims to Help Improve Access to Home Infusion IVIG for CIDP and MMN Patients, HR 3808
As a result of the community coming together this year, the Foundation is proud to share the wonderful news that our Congressional champions, led by Congressman Earl Blumenauer, Congressman G.K. Butterfield, and Congressman Chris Smith, have introduced a new bill that aims to help improve coverage of home infusion of IVIG for CIDP and MMN…
Christopher Cross Research Fund
CLICK HERE to Join Christopher Cross in Supporting Research
Ask The Experts Episode 9 – COVID-19 Vaccines and the GBS|CIDP Community
Ask The Experts Episode 9 – COVID-19 Vaccines and the GBS|CIDP CommunityFeaturing Dr. Peter Donofrio, Chairman of the Global Medical Advisory Board
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…