Pass the Give Kids a Chance Act
For parents: This one's for your kids.
Update: On December 1, 2025 the Give Kids a Chance Act passed in the House of Representatives. The bill is now in the Senate where your advocacy can help it become law!
If you're a parent watching your child suffer from porphyria, you know the heartbreak of hearing "we don't have data on how this works in children" or "this medication isn't approved for pediatric use."
Children with porphyria are often treated with adult medications at adjusted doses, with doctors hoping for the best. That's not good enough. Our kids deserve treatments developed specifically for their growing bodies.
What this bill would do:
Require pharmaceutical companies to study how treatments work in children
Create incentives for developing pediatric formulations of medications
Speed up access to treatments that work in adults but haven't been tested in kids
Fund research into how porphyria affects children differently than adults
This could mean:
Your child getting a medication designed for their age, not just a scaled-down adult dose
Faster access to new treatments without waiting years for pediatric trials
Better understanding of how to prevent attacks in children
Hope that your child's life will be easier
Take Action Now:
Contact your Senators and tell them your child's story. You can find their contact information at www.congress.gov.
What to say or write:
"My name is [YOUR NAME] from [YOUR CITY], and I'm writing about my [son/daughter], [NAME], who has porphyria [TYPE].
[Describe specific challenges: attacks interfering with school, lack of pediatric specialists, having to use adult medications, worry about long-term effects, etc.]
The Give Kids a Chance Act would require pharmaceutical companies to develop treatments specifically for children with rare diseases. Right now, we're making do with adult medications and hoping they work. Our children deserve better.
Please support the Give Kids a Chance Act. Kids with rare diseases shouldn't be an afterthought in drug development.
Thank you."
Not a parent? You can still help. Share this with parents in your porphyria support group or on social media. They need to know their voice matters.
