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Wednesday, October 28, 2020
turning advocacy
INTO ACTIVISM
In that pivotal moment when the need for urgency can no longer be denied and the status quo can no longer be accepted, your voice is the most powerful tool you have to enact change. Join us to learn how to influence Congress, hone your story and create major impact from a Nobel Peace Prize nominee for her effective activism, a global communications expert, a Capitol Hill staffer, and two powerful activists who are a patient and a caregiver.
Topics:
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Why your individual voice matters and the power behind galvanizing a community
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How to formulate your own story to influence impactful and meaningful change
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Do's and Don’ts from a Congressional viewpoint
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Lessons learned from starting a civil rights movement from a Nobel Peace Prize nominee
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How to conduct effective advocacy to move legislation in Congress
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Jace Ward
DIPG Patient & Advocate
Amanda Nguyen
CEO and founder of Rise
Gillian Parrish
Healthcare Communications Expert
Adeola Adesina
Health Policy Advisor at the US House of Representativest
BrandiLee Schafran
Director of Patient Advocacy SHEPHERD Foundation
Presentations
Adeola Adesina
Health Policy Advisor at the US House of Representativest
Gillian Parrish
Healthcare Communications Expert
Wednesday, September 30, 2020
rare cancer day
CONGRESSIONAL BRIEFING
Did you know that rare cancer is anything but rare? Ninety-five percent (380 out of 400) of all forms of cancer are rare. That means that more than 500,000 people this year will be diagnosed with some form of rare cancer, yet research and treatment for rare cancers are funded at a significantly lower rate than for those cancers considered common. All pediatric cancers are considered rare and minority groups and veterans are disproportionately affected. The system is broken. Too many lives have been altered. Too many lives have been lost.
This event included a panel presentation by diverse leaders in the field of rare cancer, including patients, oncologists and researchers. You will learn the facts about rare cancer, the gaps in current treatment and research systems, and policy recommendations for addressing them.
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