contact your

REPRESENTATIVES and SENATORS

STEPS TO FIND and contact your

U.S. Senator:

1

Visit the Senate website www.senate.gov.

2

Conduct a search using the Find Your Senators pull-down menu in the very top upper left corner.

3

On the results page is a link to the Senators’ website, contact information, and links to an online contact form.

4

Copy and paste the information as written or edited above in the message fields.

STEPS TO FIND and contact your

U.S. Representative:

1

Visit the House of Representative website www.house.gov.

1.

2

Conduct a search using the “Find Your Representative” zip code search box in the upper right corner.

2.

3

On the results page is a photo of your Representative(s), links to the Representative’s personal website and online contact form, and a local map.

4

Conduct a search using the “Find Your Representative” zip code search box in the upper right corner.

3.

5

On the results page is a link to the Representatives’ website where you can find the contact information and links to an online contact form.

6

Simply copy and paste the information as written or edited below in the message fields.

 

4.

WHAT TO SAY to your members of Congress?

Small Title

5.

6.

Draft Email Template

Dear FILL IN THEIR TITLE AND NAME (EX: Senator John Smith or Representative Joan Smith),    

 

I write to express my support for meaningful federal investments in the research and development of therapeutics for rare cancers. As a constituent who has personal experience with this issue, I have experienced first-hand the lack of rare cancer treatments and the need for federal investments to bridge this gap and would like to ask you to please co-sponsor the Rare Cancer Awareness, Research and Treatment Act.

 

ADD PERSONAL STORY    

 

Of 400 identified forms of cancer, over 380 of them are rare — that’s 95 percent of all forms of cancer. In 2019, almost one in three new diagnoses, totaling over 550,000 patients, were for forms of rare cancer. All forms of pediatric cancers and primary brain cancers are rare. Unfortunately, few rare cancer therapies exist. As of 2017, over 83 percent of all patients who lacked an FDA-approved targeted therapy were rare cancer patients. As patients and patient advocates, we would like to work with you in addressing this gap and accelerating the development of rare cancer therapies.

 

Please co-sponsor the Rare Cancer Awareness, Research and Treatment Act by contacting Congressman Butterfield, who is the lead sponsor. It is a bill garnering bipartisan support that will ensure patients and doctors alike better understand rare cancers, advance research on rare cancers with increased funding, greater data-sharing and collaboration and clinical trial participation, and ensure molecular diagnostics of tumors are accessible to all cancer patients. Adequate funding and government focus on rare cancers, not just common cancers, in R&D is particularly important in the annual appropriations process as well.

 

Thank you for your consideration. It is imperative that the federal government invest in ways to find new therapies for rare cancers and improve patient care as this directly impacts my live and the lives of many others.

 

Sincerely,  

INSERT YOUR NAME 

Call Script Template

Hello, my name is ________ and I am a constituent calling today to ask Senator/Representative ______ to support rare cancer research and therapeutic development through the appropriations process. As someone with personal experience with this issue, I know first-hand the development gap that exists in rare cancer treatments and the need for federal investments.
 

TELL YOUR PERSONAL STORY IN A FEW SENTENCES
 
Few rare cancer therapeutics exist for either children and adults. There are over 380 rare cancers out of over 400 total cancers and, as of 2019, 79 percent of patients with no FDA-approved targeted therapeutic options had a rare cancer.
 
Every cancer patient deserves next generation therapies and, most importantly, a chance to survive. I urge Senator/Representative ______ to reach out to the Appropriations Committee and ask them to fund rare cancer therapeutic development and address rare cancer in the FY21 Appropriations bills. There is rare cancer language in four of the bills: Defense, VA, Health and Human Services and Agriculture.

 

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