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Thursday, September 30, 2021
rare cancer day
CONGRESSIONAL BRIEFING
Rare cancers compose 95 percent of all forms of cancer, over 500,000 diagnoses a year – or almost one-third of all new cancer diagnoses.
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These figures are particularly hard on our military, veterans, minority communities, and children. We invite you to a briefing to hear from patients, advocates, researchers, and Members of Congress on the need for target molecular diagnostics and precision medicine for all cancer patients.
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Most rare cancers persistently lack adequate data, research, and funding. As a result, cancer patients are frequently misdiagnosed and suffer from inadequate treatment and clinical trial options.
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Congress along with advocacy organizations are working to reverse these trends and hope you will join us to learn about the challenges facing patients, researchers, and drug developers, and to learn about possible solutions.
Watch Now
Dr. Catharine Young, PhD, Executive Director, SHEPHERD Foundation
Kara Amey,
Rare Cancer Patient
Dr. Giselle Saulnier Sholler, MD, Director of the Isabella Santos Foundation Rare and Solid Tumor Program, Levine Children’s Hospital
Dr. Corrie Painter, PhD, Deputy Director, Count-Me-In, Rare Cancer Survivor
Reed Jobs
Managing Director of Health,
Emerson Collective
Congressman G.K. Butterfield [D-NC]
Co-Chair of the Rare Disease Caucus and former Chair of the Congressional Black Caucus
Alonzo Bodden, Comedian, TV Host, NPR's Wait Wait Don't Tell Me Panelist
Congressman Bilirakis [R-FL] Co-Chair of the Rare Disease Caucus
Lisa Ward,
DIPG advocate and bereaved mother of Jace Ward
David Hysong
Founder, Patient and CEO
SHEPHERD
Tuesday, July 27, 2021
Cancer Patient Equity Act of 2021
Introduction to the
The team at SHEPHERD Foundation is excited to share that the bipartisan supported Cancer Patient Equity Act of 2021 is set to be introduced soon! This is a moment two years in the making with hundreds of meetings with congress members, patients, advocates and oncologists. This legislation has two critical goals: to set a federal definition of rare cancer and mandate insurance coverage of molecular diagnostics at the time of diagnosis.
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Please join us for our 2nd Facebook Live event at 3pm EST for a Q&A between our Director of Patient Advocacy, BrandiLee Schafran, and, John Richter, Federal Legislative Director at G2G Consulting. They'll be discussing policy and advocacy and will also answer any questions you may have about the bill.
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Thursday, July 22, 2021
Cancer Patient Equity Act of 2021
Introduction to the
The team at SHEPHERD Foundation is excited to share that the bipartisan supported Cancer Patient Equity Act of 2021 is set to be introduced before August recess! This is a moment two years in the making with hundreds of meetings with congress members, patients, advocates and oncologists. This legislation has two critical goals: to set a federal definition of rare cancer and mandate insurance coverage of molecular diagnostics at the time of diagnosis.
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Please join us on Facebook at 3pm EST for a live Q&A between our Director of Patient Advocacy, BrandiLee Schafran, and, Kate Arline, SHEPHERD's Chief Strategy Advisor. They'll discuss what's in the bill and answer any questions you may have. Kate has been instrumental in crafting this legislation and has a shared desire to change the system and better the outcome for all cancer patients. Tune in to learn what this means for ALL cancer patients. We will hold another live event next week to share how you can help advocate for the passage of this bill.
Tuesday, April 13, 2021
congressional directed medical research program
(CDMRP) CANCER PROGRAMS
The Department of Defense’s Congressional Directed Medical Research Program (CDMRP) includes a variety of different cancer research grant opportunities, which sometimes makes it difficult to choose the best program given that research often involves several different types of cancers. In this webinar, researchers will hear from the program leads for several programs to better understand which program is the best fit for their specific grant application and why.
Speakers:
• Nicole Williams, Ph.D. - Program Manager Pancreatic Cancer Research Program and Autism Research Program
• Sagar Ghosh, Ph.D. - Program Manager Rare Cancer Research Program and Ovarian Cancer Research Program
• Donna M. Kimbark, Ph.D. - Program Manager Peer Reviewed Cancer Research Program and Melanoma Research Program
In addition to providing a general overview of the CDMRP, the following programs will be highlighted:
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Peer-Reviewed Cancer Research Program (PRCRP)
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Ovarian Cancer Research Program (OCRP)
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Rare Cancer Research Program (RCRP)
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Pancreatic Cancer Research Program (PACRP)
SHEPHERD was proud to co-sponsor the following webinar along with The American Gastroenterological Association, The Deadliest Cancers Coalition, and The Defense Health Research Consortium
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
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
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. The facts about rare cancer, the gaps in current treatment and research systems, and policy recommendations were discussed.
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
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. The facts about rare cancer, the gaps in current treatment and research systems, and policy recommendations were discussed.
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
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. The facts about rare cancer, the gaps in current treatment and research systems, and policy recommendations were discussed.
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