PCD Resources
I want this blog to be a working post that I add to and update as needed. I hope it will help parents facing the news of a PCD diagnosis or any person WITH PCD looking for more information and connection.
First of all, It is important to note that we live in the United States. So OUR go-to for information is the PCD Foundation. They are the basket that we put all our eggs in. The PCD Foundation was founded in 2002 by a mother of a child with PCD and an adult living with PCD. They now work with a board of directors, each directly affected by PCD, and a Medical and Scientific Advisory Council. Together, they work to find a cure for PCD.
*I do not work for the PCD Foundation. I raise money for them. :)
Or PCD Related Pages
Facebook:
PCD Foundation
Breathe for PCD
PCD Family Support Group
PCDF Connect (this one is moderated by the PCD Foundation)
PCD: Good, bad and everything in between
PCD Smiles (This is a charity founded and run by a woman with PCD that raises money to send cheer packages to PCD patients in the hospital)
Running on Air (A charitable organization founded by a woman living with PCD whose mission is to help others breathe more easily.)
PCD Related Infertility Support
PCD Australia
PCD Australia Family Support Group
PCD Support UK
This is HUGE. This document came out in 2015 when our baby was one year old. “This review article outlines consensus recommendations from PCD physicians in North America who have been engaged in a PCD centered research consortium for the last 10 years. These recommendations have been adopted by the governing board of the PCD Foundation to provide guidance for PCD clinical centers for diagnostic testing, monitoring, and appropriate short and long-term therapeutics in PCD patients.” In other words…read this to learn what PCD doctors agree on for diagnosing and treating PCD.
Click here to read: Diagnosis, monitoring, and treatment of primary ciliary dyskinesia: PCD foundation consensus recommendations based on state of the art review
It is important to make sure you are receiving the best care possible. PCD centers are clinics that are familiar with the current research and information on PCD. This means they also know how best to treat people with PCD. I recommend, at the least, to get in at a PCD center once a year to get in their system and the PCD Foundation’s registry (more on that later!), and to set up your daily airway clearance plan.
Click here: PCD Centers