Policy Toolkit

Resources

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Downloads

Policy Cheat Sheets

 

PDFs include: Policy Terms Glossary, How a Bill Becomes Law (Visual), Timeline of Rare Disease Policy Milestones

 

(Coming Soon)

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Contact Templates

  • Letter to a Representative
  • Email to a Senator
  • Call Script for Voicemail or Live Staffer
  • Printable Advocacy Guide

 

(Coming Soon)

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Sign Up for Action Alerts

Stay up to date with rare disease legislation by signing up for alerts and advocacy campaigns from:

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Share the Toolkit

  • Email to your care team
  • Bring to patient meetups
  • Share on social media with your story
  • Use at local town halls or advocacy events

Empowerment begins with knowledge. Spread the word.