Become an Advocate for the PCD Community

Every day, individuals and families affected by Primary Ciliary Dyskinesia (PCD) serve as powerful advocates—raising awareness, seeking better treatments, and pushing for the highest standards of care.

While personal advocacy is essential, there are also opportunities to create broader change on behalf of the entire PCD community. Whether you’re new to advocacy or looking to do more, your voice matters.

Here are a few impactful ways you can help raise awareness and promote progress:

Reach out to local media. Encourage your local news outlets to feature a story about PCD to help raise public awareness.
Educate your community. Consider giving a short presentation about PCD at your child’s school or local community center.
Speak with future healthcare providers. Volunteer to talk about PCD with students in medical, nursing, or respiratory care programs.
Engage with your elected officials. Make sure your local, state, and national representatives know about PCD and the importance of research funding for rare diseases.
Use our advocacy tools. The PCDF offers sample letters you can send to your representatives to help you get started.
Schedule a meeting. A personal visit with a legislator or their staff can make a lasting impact—after all, they work for you!

Need support?

The PCD Foundation is here to help. If you’re interested in organizing a letter-writing campaign or planning a visit to your representative, don’t hesitate to contact us.

Together, we can make a difference.