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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.

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.

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.

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

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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.

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.

 

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.

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: 

  • Peer-Reviewed Cancer Research Program (PRCRP)

  • Ovarian Cancer Research Program (OCRP)

  • Rare Cancer Research Program (RCRP)

  • Pancreatic Cancer Research Program (PACRP)

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. The facts about rare cancer, the gaps in current treatment and research systems, and policy recommendations were discussed.

Watch Now

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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

GK%20Butterfield%20OFFICIAL%20HOUSE%20PH

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

GK%20Butterfield%20OFFICIAL%20HOUSE%20PH

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