Become an Advocate

As people who care about PCD, we are advocates for our loved ones in many ways every day, raising awareness of the disorder, pushing for access to research for better therapies and a cure, insisting on the best possible care, etc. In addition to these personal activities, we can be advocates for the PCD community on the whole. The possibilities are endless. Here are just a few ideas to raise awareness:

  • Contact local news outlets and ask them to do a story about PCD
  • Consider doing a presentation about PCD at your child’s school
  • Volunteer to talk about PCD with local medical, nursing or respiratory care students
  • Make sure your elected representatives know about PCD and research funding issues for rare diseases
  • Use PCDF sample letters for elected representatives
  • Make personal visits to your representatives—remember, they work for you!
  • Contact the PCDF if you would like help planning a visit or letter-writing campaign