Advocacy is when a person or a group of people communicates with a government official or their staff to influence bills and laws that reflect the needs, wishes, or wants of a certain community. Learn All About Advocacy.
Advocacy Policies The GBS|CIDP Foundation International is committed to advocating for policies that enhance the lives of individuals affected by Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN) and related conditions. Our policy engagement focuses on key areas that directly impact our community. Policy Priorities To achieve these goals, we will:…
GBS|CIDP Foundation International Welcomes New Congress and New Administration, Additional Opportunities for Advocacy This month, GBS|CIDP Foundation International sent its introductory and welcome letter the 119th United States Congress, expressing the needs of our patient and caregiver community. In the letter sent to all current US Representatives and Senators, we outlined our vision for convenient…
An Interview with Ralph G. Neas, GBS and CIDP Written by: Ellie Herman, Advocacy Coordinator Thirty-Four years ago, the Americans with Disabilities Act (ADA) was signed into law. We decided to celebrate the anniversary of this monumental piece of legislation by sitting down with Ralph G. Neas, a key civil rights leader in Washington, who…
2024 Hill Day Written by Ellie Herman, Advocacy Coordinator To kick off the first day of GBS|CIDP Awareness month, the Foundation went to Capitol Hill with over 30 volunteers consisting of patients, care partners, health care professionals, and many of our staff. Prior to Hill Day, volunteers participated in a compelling storytelling webinar series to…
The GBS|CIDP Foundation International acknowledges the urgent need for airlines to respect and improve their treatment of people with rare conditions and their medical equipment while at airports and flying. Too often, mobility devices, wheelchairs, and other medical equipment are mishandled or damaged by airline staff due to neglectful treatment and a lack of understanding…
Written by Ellie Herman, Advocacy Coordinator To recognize International Plasma Awareness Week and educate their community about the need for plasma donations, students and staff at Meredith College in Raleigh, North Carolina held a Project Plasma awareness event on October 4th. Meredith’s Marketing and Communications Office and Student Wellness Organization hosted a tabling event where…
In anticipation of the Foundation’s most recent iteration of our Medicare IVIG Access Enhancement Act being introduced in the House of Representatives in the coming days, Foundation staff Chelsey Fix and Ellie Herman went down to Capitol Hill for a day of on-the-ground advocacy. Joined by Health and Medicine Counsel staff, they met with 6…
On May 27, Congressman Garamendi, recognized the Month of May as GBS|CIDP AWARENESS Month and introduced the Medicare IVIG Access Enhancement Act to the House of Representatives. Read full script here Download (PDF)
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…
On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and…
By: Chelsey Fix Medicare is confusing – that’s a fact! Add the confusing Medicare system on top of a complex treatment for a rare disease, and it’s easy to feel overwhelmed. The Foundation is here to help all of our patients navigate health insurance headaches! For now this article explains the current Medicare situation for…
In 2019, The GBS|CIDP Foundation International was honored with a membership to the National Health Council (NHC). The Foundation joins over 140 other organizations, including major pharmaceutical companies, well-known patient support foundations, and respected professional societies, in their Membership. The mission of the NHC is to provide a united voice for the 160 million people…
By Chelsey Fix, Advocacy Manager It’s been over 20 years since Schoolhouse Rock released its last video, which makes me think that we all need a refresher on the process by which a bill becomes a law! As a throwback, enjoy everyone’s favorite Schoolhouse Rock civics lesson by clicking here. As a recap, that I…