A Capitol Hill Kick-Off for GBS|CIDP Awareness Month

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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 equip them with tips and tricks to craft and share their stories successfully on the Hill. Volunteers shared their stories with Congressional staff to create greater awareness of the lived experiences of those diagnosed with GBS, CIDP, MMN, and related conditions, collectively engaging with over 30 Congressional offices. 

While the major accomplishment of Hill Day was increased awareness about our rare disease community, we also sought support for HR 5818, a bill that would allow patients on Medicare Part B to receive their infusions of Intravenous Immunoglobulin (IVIG) at home. HR 5818, championed by Representatives John Garamendi and Adrian Smith, would allow CIDP and MMN to be added to an existing Medicare benefit in place for patients with Primary Immunodeficiency (PI). For more details and updates on HR 5818, please visit this link. If you are interested in getting involved with advocacy at the Foundation, please reach out to Ellie.Herman@gbs-cidp.org.    

A heartfelt thank you to our exceptional Hill Day volunteers who made the day a success!