HELP KEEP RARE DISEASE RESEARCH FUNDING A PRIORITY

Urge your Members of Congress to protect rare disease experts, funding, and stability of our nation’s biomedical research and public health agencies by contacting your members of Congress.

SEND AN EMAIL OR LETTER

The LAM community has an opportunity to advocate for themselves and the broader rare disease community by sending an email or letter to their congressional representatives.   For the 30 million Americans living with one or more rare diseases, steady federal support for robust biomedical research and stability at national public health agencies are essential to advancing lifesaving research and public health initiatives.  Our goal is simple: to keep the importance of rare disease research in front of our legislators. 

Below is sample wording you can use or edit to contact your representative.

How do you identify your members of Congress? 

 

 

 

 

 

 

 

 

CLICK HERE to search for your members of Congress.  Enter your address into the box below “Find Your Members” (see image below) and select your address.

Your three members will then be listed.  It is possible, based on your address, that two Representatives are listed.  If you are unsure which one is yours, you can contact both.  Most Representatives have an address lookup to limit emails only to their constituents.

[Date]

The Honorable [Member’s Name] [United States Senate/House of Representatives] [Office Address – only if sending thru postal service]

Washington, D.C. [20510/20515 – only if sending thru postal service]

Dear [Representative/Senator Last Name],

For the 30 million Americans living with one or more rare diseases, steady federal support for robust biomedical research and stability at national public health agencies are essential to advancing lifesaving research and public health initiatives.  As a constituent in your [DISTRICT/STATE], and a person living with the rare disease, Lymphangioleiomyomatosis (LAM), I am deeply concerned at the devastating and lasting impact recent executive orders may have on programs that are vital to thousands of rare disease patients, researchers, and our community as a whole.  The National Institutes of Health (NIH), in particular, plays a pivotal role in moving LAM science forward towards a cure.

A strong commitment to our federal health agencies is a commitment to the millions of Americans and families affected by rare diseases who rely on federal leadership to drive progress. And a strong commitment to funding research spurs innovative collaborations, builds infrastructure to attract private investment, and helps ensure our nation remains a global leader in working to cure diseases that were once deemed too rare or complex to treat.

I implore you to reinforce the longstanding, bipartisan commitment to the vital role that our biomedical ecosystem and federal health agencies play in protecting and advancing the health outcomes of all Americans. For children and adults with rare diseases, even a momentary pause in funding for these programs or agencies has devastating, life-altering consequences. In our community, time is a commodity and resources are precious.

Can I count on you to support the funding of our national public health agencies and rare disease research, so that constituents like me can be assured of progress and hope?

Sincerely,

[Your Full Name]
[Your Contact Information]

OR

MAKE A PERSONAL PHONE CALL TO YOUR CONGRESSIONAL REPRESENTATIVE

How to Prepare 

  1. Identify your congressional leaders.
  2. Edit the sample conversation script below for your situation.
  3. Read your conversation ahead of time and practice so you have the correct information.
  4. Set aside a time to make the call.
  5. Call your Representative and Senator.
  6. After your call, share about calling online, and tag The LAM Foundation and your members of Congress.

 

SAMPLE SCRIPT:

I am calling today to let [Representative/Senator name] that as a constituent in your [district/state] and a person living with the rare disease, Lymphangioleiomyomatosis (LAM), I am deeply concerned about the devastating and lasting impact of recent executive orders may have on programs that are vital to thousands of rare disease patients and researchers.  The National Institutes of Health (NIH), in particular, has played a pivotal role in moving LAM science research forward which helped lead to an important treatment for our community.

I am asking [Representative/Senator name} to reinforce the longstanding bipartisan commitment to our federal health agencies.  For children and adults with rare diseases, even a momentary pause in funding for these programs or agencies has devastating, life-altering consequences.

I hope I can count on [my representative/senator] to support the resumption and continued funding of our national public health agencies and rare disease research so that constituents like me can be assured of progress and hope.

 

 

Menu