Protect Research Funding at the National Institutes of Health (NIH)
Your story matters. Here’s why:
Every breakthrough in porphyria treatment started with research. The medications that manage your symptoms, the diagnostic tests that finally gave you answers, the clinical trials offering new hope all came from NIH-funded research.
Right now, proposed budget cuts threaten to slash NIH funding by as much as 40%. For rare diseases like porphyria, this is devastating. We rely on federal research dollars to move science forward.
What's at stake:
Fewer clinical trials for new porphyria treatments
Delays in understanding why attacks happen and how to prevent them
Lost opportunities to develop better diagnostic tools
Your members of Congress need to hear from you that preserving NIH funding is critical.
Take Action Now:
Call or email your two senators and your representative in Congress. You can find their contact information at www.congress.gov.
What to say or write:
"My name is [YOUR NAME] and I'm your constituent from [YOUR CITY]. I'm writing to urge you to protect funding for the National Institutes of Health in the upcoming appropriations bills.
I have porphyria [TYPE], a rare disease that [briefly describe your experience, including diagnostic delays, attacks, treatment challenges]. NIH-funded research is the reason we have any treatments at all for conditions like mine.
Cutting NIH funding means cutting hope for people with rare diseases. Please fight to maintain and increase NIH funding. Our lives depend on it.
Thank you for your time."
Feel free to make it personal. Tell them about the emergency room visits, the years without a diagnosis, or how you had to quit your job. Your story is more powerful than any statistic.