Rare Cancer Toolkit

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 THE SYSTEM IS BROKEN -

WITH YOUR HELP,

WE CAN FIX IT

IT'S TIME THAT WE START HOLDING THE SYSTEM TO A NEW STANDARD

Welcome to the

#RareRevolution

DIGITAL TOOLKIT

YOUR GUIDE FOR TAKING ACTION

LEARN |  ADVOCATE | GET LOUD

know THE FACTS

In 2019, nearly 1 in 3 new cancer diagnoses were rare – about 550,000 Americans.

As of 2018, 79% of cancer patients lacking approved targeted therapy have a rare cancer.

There are at least 400 forms of cancer. 380 are considered “rare.”

From 2012 to 2016, 75% of clinical trials did not specifically include any rare cancers.

FOR A COMPREHENSIVE FACT SHEET

 
 

to help enact legislative change

Your voice matters.

Contact your Representatives and Senators in DC to help call attention to the fact that rare cancer is an issue their constituents are demanding change for.

STEP

1

Find your members of Congress

Click here for a step-by-step guide

STEP

2

Know what to say

Find email and phone script templates here

STEP

3

Find out more about the Rare Cancer Awareness, Research and Treatment Act

Click here for a description of soon-to-be introduced legislation

STEP

4

Still have questions?

Watch our tutorial video here

 

share YOUR STORY

and we'll take it to CONGRESS

We want to amplify your voice, your story, your journey.

Whether you are a patient, a caretaker, an advocate, a clinician, or a researcher - your rare cancer story matters.  
That’s why we have started a campaign to collect stories from around the country - with a purpose.

Each chapter will be devoted to a US state and delivered to your state’s representatives on Capitol Hill. The final book, with all 50 chapters, will be delivered to the President in January.

Help us show Congress and those in charge of creating policy that RARE IS NOT RARE.

 

complete the

PATIENT LIGHTHOUSE

survey

We believe in democratizing knowledge and resources for all cancer patients.

To ensure that all patients and their families have equal access to information, we are building the Patient LightHouse - an online platform designed by the community for rare cancer patients, families, caregivers, and providers. It will serve as the first stop for trusted information and available resources.

Help us shape the design of the Patient LightHouse platform by completing a short survey so that we can fully understand the gaps that need to be filled.

join the

      GLOBAL COALITION

We've created a social media toolkit for you.

Whether you are a rare cancer patient, family member, caregiver, researcher, clinician, or organization, we want you to be an activist with us and advocate for legislative change on behalf of all rare cancer patients.

We’ve put together sample twitter, facebook and instagram posts for you to use here:
 

Hashtags

Twitter

Facebook

Instagram

 
 

sign the

MOLECULAR DIAGNOSTICS

petition

Molecular Diagnostics can mean the difference between life and death.

Sign the petition to amplify the voices of rare cancer patients and help make the case to Congress and the federal government that every cancer patient deserves the best care modern science and medicine can provide - this means covering molecular diagnostics at the time of diagnosis.

Important RESOURCES

1

talking points about RARE CANCER
Whether you are talking with your friends and family or with members of Congress, be armed with the facts about RARE cancer.

2

contacting your MEMBER OF CONGRESS
We’ve taken the guess work out for you. Find step-by-step instructions on how to contact your Member of Congress, as well as email and script templates.

3

directory of RARE and PEDIATRIC FOUNDATIONS
We’ve created a comprehensive directory of US organizations who are working on behalf of rare and pediatric patients.

4

5 QUESTIONS to ask your doctor about your cancer
Knowing the right questions to ask can empower you to make the right decisions.

5

RARE CANCER updates
Stay up to date with the latest developments in rare cancer.

DOWNLOAD A PRINTABLE VERSION OF THE TOOLKIT HERE

 

JOIN THE FIGHT


Catharine Young, Ph.D, Executive Director




BrandiLee Schafran, Director of Patient Advocacy
 

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© 2020 by SHEPHERD Foundation