Thank you for signing up!

Thank you for your interest in the American Kidney Fund's Rare Kidney Disease Advocacy Network. We will reach out to potentially eligible participants shortly.

Things you can do now:

  1. View our resources on IgA nephropathy.
  2. Learn about other rare kidney diseases.
  3. Watch our 2024 Congressional Briefing, which focused on addressing rare diseases.
  4. Learn more about kidney disease .
  5. Join the AKF Ambassador Network and registering, or text KIDNEY to 52886 and follow the prompts.
  6. Recruit at least two friends to the Rare Kidney Disease Advocacy Network.
  7. Read about our top policy issues. 
  8. Start thinking about the best way to tell your story. Is it personal, short, easy to follow, and has emotional impact?
  9. Respond right away to action alerts sent to you via email or text — why wait?
  10. Forward email action alerts to your family and friends, asking them to take action, too. It takes all our voices together to make a difference!
  11. Introduce yourself to your state lawmakers as an American Kidney Fund advocate.
  12. Contact your legislator or other key stakeholders through emails, letters, tweets or a meeting (contact Jon Hoffman at for more information).
  13. Write a letter to the editor of your local newspaper on a particular issue — it's a powerful way to communicate with your legislators and community. (contact Ben Shlesinger at information).
  14. Attend upcoming monthly Ambassador Zoom meetings — watch for emails.
  15. Speak to local groups about your kidney journey. Connect with your AKF partner to get started. 
  16. Testify at a public hearing about the importance of including patient experience when crafting policy.