May is National GBS-CIDP Awareness Month
NARBERTH, Pa., May 6, 2016 /PRNewswire-USNewswire/ — GBS-CIDP Foundation Int’l, Narberth, PA, is the preeminent global non-profit organization supporting individuals and their families affected by Guillain-Barré (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and their variants. The Foundation provides support, education, research and advocacy and is proud to announce May as National GBS-CIDP Awareness Month. GBS,…
Advocacy Action Alert–Contact Your Representatives Today!
Action Alert Support Congressional Efforts to Advance and Expand Research into Peripheral Autoimmune Neuropathies, including GBS, CIDP, and variants Background Each year, Congress decides how much federal funding should be applied to medical research activities and provides guidance to the National Institutes of Health (NIH) on what conditions legislators are particularly interested in. They also…
GBS|CIDP Foundation International’s Global Medical Advisory Board recommendations on Zika virus and Guillain-Barré syndrome
PHILADELPHIA, /PRNewswire/ — The GBS|CIDP Foundation International has been closely following the fast moving story of Guillain-Barré syndrome following Zika infection first in French Polynesia and now in South America. On February 29, 2016, The Lancet released the first full account of the French Polynesian experience with GBS and Zika. The worldwide incidence of GBS…
Congressman John Garamendi, Champion for GBS in the US Congress
Congressman John Garamendi, recently honored as our Legislator of the Year at our 35th Anniversary Gala, continues to be a Champion for GBS and the GBS|CIDP Foundation! Congressman Garamendi recently released the following “Dear Colleague” letter to help raise awareness and support of our conditions and the services we provide in the wake of the…
Advocacy Action Alert: We Need YOUR HELP!
As many of you know, the GBS|CIDP Foundation International is actively involved in political advocacy within the United States to help improve the lives of our patients. We are currently working on getting GBS included on a list of conditions deemed eligible for study under the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP), which…
Pregnant mom relives paralysis of Guillain-Barré amid Zika virus scare
Susan Donaldson James TODAY.com Bridget Hamilton was 10 weeks pregnant when Guillain-Barré syndrome struck in 2012. The Dubuque, Iowa, mom spent 84 days in the hospital, much of the time paralyzed and in severe pain, away from her three other children. Guillain-Barré is a rare neuromuscular disease, affecting about 1 in 100,000, but higher rates…
Incidence of Guillain-Barré Syndrome Rising As Zika Spreads
Dr. Kenneth C. Gorson, MDPresident Elect GBS|CIDP Foundation International Global Medical Advisory BoardGuillain-Barre syndrome (GBS)Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Medical Research: What is Guillain-Barré Syndrome? What are the main symptoms?Dr. Gorson: Guillain-Barré Syndrome (GBS) is an immune mediated disorder affecting the peripheral motor and sensory nerves and nerve roots, and is the most common cause…
Update on Zika virus and onset of Guillain-Barré Syndrome
The GBS|CIDP Foundation International and its Global Medical Advisory Board is closely monitoring the suspected link between the Zika virus and the onset of Guillain-Barré Syndrome (GBS).
2015 Advocacy Efforts Update
The GBS|CIDP Foundation is constantly working with our legislators on Capitol Hill to pass legislation that both directly and indirectly improves the lives of our patients. Here’s a snapshot of what we accomplished in 2015, and what we have on the docket for 2016: Consistent with the community’s request, NIH received an additional $2 billion…
2016 Walk & Roll Announcement!
Our 2016 Walk & Roll season is officially in the beginning stages! We are so excited for what this year has in store for us! One major announcement is the addition of a new staff member – our new Walk & Roll Coordinator! Please give a big, warm, Foundation welcome to our new Walk & Roll…
New Law Increases Access to Care for Chronic Conditions in California
Neuropathy Community Applauds Enactment of AB 339 Following advocacy by the public health community, AB 339 was recently signed into law, which will help Californians with chronic conditions, like neuropathies, access healthcare by containing certain out-of-pocket costs. The vast majority of Covered California patients will see their specialty drugs capped at $250 per month, per prescription….
14th International Symposium Set for September 2016!
With a little over a year to go, it’s time to start getting ready for our next International Symposium!! One of many highlights of the GBS|CIDP Foundation is our biennial Symposium. We consistently receive an out-pouring of appreciation from attendees for offering such a unique experience for our patients, caregivers, families, and medical professionals. So,…
Congratulations to our Mazawey Fellowship Recipient
The GBS|CIDP Foundation International proudly announces the recipient of the first Mazawey Fellowship. This year’s winner is Dr. Marielle H.J. Pruppers from the Department of Neurology, University Medical Center Maastricht, Maastricht, The Netherlands. Her study, “IgM Anti-MAG Peripheral Neuropathy: From Proper Assessment to Trial Needs- (IMAGiNe study) was selected for this prestigious award and was…
Help us #UpgradeYourWorld
Help us #UpgradeYourWorld and do more to improve the quality of life for individuals and families affected by GBS, CIDP, or related syndromes such as MMN. GBS|CIDP Foundation International has the chance to win $500k and technology and support from Microsoft. Public voting will determine the winner so please vote for us each day using…
Estelle Benson, Founder, Wins PSI’s President’s Award
The Foundation is pleased to announce that our founder, Estelle Benson, was awarded the President’s Award from the Patient Services, Inc. (PSI). The Foundation’s Regional Directors and several Board Members joined the PSI community in honoring Estelle on April 22, 2015. The reception was held in Washington, DC at the Rayburn House Office Building. In…