Foundation News

Charity Navigator Names GBS|CIDP Foundation as ‘Charity Worth Watching’

10 Charities Worth Watching Many of America’s most effective charities are also household names. But some well-known charities are less effective than you’d think, while a number of lesser known charities are truly exceptional. These 10 charities all operate on less than $2 million a year, but they all earn a four-star rating from Charity Navigator….

Announcing the 2017 GBS|CIDP Foundation Grant Awardees

2017 GBS|CIDP Foundation Grant Awardees (#1) Title of the project: Enhance Peripheral Nerve Repair by Modulating Macrophage Subsets Investigator: Gang Zhang, M.D; Ph.D Assistant Professor of Neurology University of Texas, Health Sciences Center at Houston Synopsis: Intravenous immunoglobulin (IVIg) is now the first-line therapy for Guillain-Barré syndrome (GBS). However, there are many disadvantages including high cost, supply…

Marketplace Access Project Applauds Bipartisan Letter from 181 Members of Congress Urging HHS to Protect Life-Saving Charitable Patient Assistance

Letter Introduced by Reps. Kevin Cramer (R-ND) & Doris Matsui (D-CA) Seeks to Protect Quarter of a Million Americans Who Depend on Charitable Assistance for Access to Critical Healthcare WASHINGTON, D.C. (May 31, 2017) – The Marketplace Access Project (MAP), a group of leading national patient advocacy organizations dedicated to protecting non-profit insurance premium and…

GBS|CIDP Foundation International 2017 Benson Clinical Research Fellowship

GBS|CIDP Foundation International 2017 Benson Clinical Research Fellowship   The GBS|CIDP Foundation International is pleased to announce a competition for the second Benson Clinical Research Fellowship.  The aim of the scheme is to provide funds (up to $150k per year for three years) to enable clinicians or non-clinical scientists in training or having recently completed training…

Largest Ever CIDP Clinical Study Completed

Largest Ever CIDP Clinical Study Completed PATH study evaluated subcutaneous immunoglobulin efficacy and safety for treating Chronic Inflammatory Demyelinating Polyneuropathy KING OF PRUSSIA, Pa. – 01 March 2017 – Global biotherapeutics leader CSL Behring announced today that it has completed the largest ever Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) trial, known as PATH (Polyneuropathy And Treatment…

Our Executive Director, Lisa Butler’s Interview in PPTA Winter Newsletter

Can you tell me about the GBS|CIDP Foundation and the work you do? We were founded 35 years ago by Estelle Benson. Her husband, Bob Benson, was diagnosed with GBS and when she went to look for information and support services for this rare condition, nothing existed. She vowed that she would do something about…

The Access to Marketplace Insurance Act (H.R. 3742)

  Access to Marketplace Insurance Act (H.R. 3742) This bill amends the Patient Protection and Affordable Care Act to require health insurers to accept, on behalf of individuals enrolled in qualified health plans, payments made by certain third parties, including state and federal government programs, Indian tribes, tribal organizations, urban Indian organizations, and certain tax exempt…

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…

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…

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….

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…

Pagination