Advocacy News

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.

Foundation Hosted Patient Listening Session on Guillain-Barre Syndrome with The FDA

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…

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GBS|CIDP Foundation International Dedicates October to Advocacy “Month of Action”

[CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, August 31, 2020 This October, The GBS|CIDP Foundation International is encouraging patients and caregivers affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) or variants of the condition such as Multifocal Motor Neuropathy (MMN), to join a virtual “Month of Action” advocacy campaign. Opportunities for participating in “Month…

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Advocacy Action Alert: Ask Your Senator to Support Charitable Assistance

Charitable non-profit patient assistance foundations help thousands of Americans afford their health care every year, particularly those who are living with expensive chronic and rare diseases. Recently, Sen. Kevin Cramer of North Dakota developed a provision that would allow third-party groups (like patient assistance organizations) to pay premiums on the behalf of patients during the…

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Wrap Up With A Win – Awareness Month’s Advocacy Week Brings Legislative Victories

Our 2020 May Awareness Month went digital this year, but that did not stop nearly 100 advocates across the US from participating in virtual advocacy through the Advocacy Action Center. THANK YOU to everyone who took the time to create a letter for Members of Congress. Together, we make our voices heard by lawmakers and…

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