Make Your Voice Count!

Join us in endorsing the recent appeal to Congress with the following actions. Your voice is important to continue these services for patients and provide opportunities for researchers to find the cures.

Tips for What to Say

Here is a script you may like to use when calling or emailing your Representative or Senators.

My name is (name) and I live at (street address, city, state, zip code) and I urge you to support and protect funding for NIH research.

I am a (state your relationship ; e.g., parent, sibling, self-advocate, researcher, clinician, professional, etc.) and I am deeply grateful for NIH’s investments in (name of disease) research. These critical funds have allowed doctors to make significant strides in better understanding rare diseases that impact thousands of individuals and families like mine.

(Tell your NIH story here, if applicable.)

Federal research dollars from the NIH have been critical in advancing our knowledge of (disease name), a rare bone marrow failure disease. Because of these funds, there are researchers dedicated to (disease name), advancing our understanding and moving us closer to having a cure and saving lives. I am still waiting for more effective treatments and a CURE, and continued NIH funding is key to saving my life and thousands of others.