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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:

  • Why your individual voice matters and the power behind galvanizing a community

  • How to formulate your own story to influence impactful and meaningful change

  • Do's and Don’ts from a Congressional viewpoint

  • Lessons learned from starting a civil rights movement from a Nobel Peace Prize nominee

  • How to conduct effective advocacy to move legislation in Congress

Watch Now

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

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Adeola Adesina

Health Policy Advisor at the US House of Representativest

Gillian Parrish

Healthcare Communications Expert

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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.

Watch Now

Congressman G.K. Butterfield [D-NC]

Co-Chair of the Rare Disease Caucus and former Chair of the Congressional Black Caucus

Congressman Bilirakis [R-FL] Co-Chair of the Rare Disease Caucus

Candace Granberg, MD

Pediatric Urologist

Mayo Clinic

David Hysong

Founder, Patient and CEO

SHEPHERD

Reed Jobs

Managing Director of Health,

Emerson Collective

BrandiLee Schafran

Director of Patient Advocacy,

SHEPHERD Foundation

Greg Simon, JD

Former President of the Biden

Cancer Initiative,

Director of the Cancer Moonshot

Jace Ward

DIPG cancer patient

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