Speaker Series – Episode 8 Summary In this episode of our Speaker Series, we talked with Phil Goglas about the status of our HR 5818 Bill, advocacy strategies, and more! Phil Goglas is a managing partner at the Health and Medical Counsel in Washington, DC, a government relations firm that provides access and guidance to…
Speaker Series – Episode 7 Summary In this episode of our Speaker Series, we dive into the world of science to understand Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) from our Benson Fellowship Awardees Dr. Elba Pascual Goñi MD, PhD, Ruth Huizinga, PhD. Relevant Resources Centers of Excellence: https://www.gbs-cidp.org/support/centers-of-excellence/ Doctor to Doctor Consult:…
Speaker Series – Episode 6 Summary In this episode of our Speaker Series, we dive into the world of treatments for GBS, CIDP, and MMN as well as understanding them from Dr. Saperstein, a neurologist on our Global Medical Advisory Board. GBS CIDP MMN Anti-Mag Waiting for FDA Approval Relevant Resources Treatment guidelines – https://www.gbs-cidp.org/gbscidp-guidelines-for-treatment-and-diagnosis/…
Speaker Series – Episode 5 Summary In this episode of our Speaker Series, we dive into the world of navigating your health care journey with steps to take, how coverage works, and understanding levels of care with Health Navigator, Amy Stein. Amy is a Licensed Clinical Social Worker and has over 25 years of experience…
Speaker Series – Episode 4 Summary In this episode of our Speaker Series, Dr. Linda Bluestein, a board-certified anesthesiologist, integrative pain medicine physician, former ballet dancer, and expert in hyper-mobility disorders, who shares her experience and expertise on pain and pain management through the acronym MENS PMMS. Resources Treatment guidelines – https://www.gbs-cidp.org/gbscidp-guidelines-for-treatment-and-diagnosis/ Treatments & Access…
Speaker Series – Episode 3 Summary In this episode of our Speaker Series, we dive into conversations that patient should have with their doctor from three MMN patients, Pam Stoikopoulos, Richard Sparry, and Clive Phillips. Resources Website Information – What is MMN? Speaker Series Episode – What is MMN? Centers of Excellence – Center for…
Speaker Series – Episode 2 Summary In this episode of our Speaker Series, we talked with Dr. Karissa Gable from Duke University about variants of GBS and CIDP, mimics, its symptoms, and how each are treated. Resources Treatment guidelines – https://www.gbs-cidp.org/gbscidp-guidelines-for-treatment-and-diagnosis/ Treatments & Access page – https://www.gbs-cidp.org/treatments-access/ Centers of Excellence – https://www.gbs-cidp.org/support/centers-of-excellence/ Doctor to Doctor…
Speaker Series – Episode 1 Summary In this episode of our Speaker Series, we discuss what MMN is with Dr. Michal Vytopil from Beth Israel Lahey Health and Brenda Perales, an MMN patient and volunteer, who share their expertise on the clinical course, diagnosis and progression of MMN, and available treatments and resources for patients….
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