PCD Resource List
Your one stop source for all things primary ciliary dyskinesia. Cant' find what you are looking for? Do you want to add a link to your primary ciliary dyskinesia related page, article, blog, merchandise? Please direct all inquires to our email;
Organizations
Australia PCD
Website: https://pcdaustralia.org.au
Facebook: https://m.facebook.com/PCDAustralia/?fref=ts
Twitter: https://mobile.twitter.com/PCDAustralia
Breathing Together PCD/Kartagener's Cyprus
Facebook: https://m.facebook.com/pcd.cyprus/
French Primary Ciliary Dyskinesia Association
Website: https://www.adcp.asso.fr
Facebook: https://m.facebook.com/ASSODCP/
Italian Association for PCD
Website: http://www.pcdkartagener.it/
Facebook: https://m.facebook.com/groups/AIDKartagener
PCD Family Support Group UK
Website: http://pcdsupport.org.uk
Main Facebook: https://m.facebook.com/PcdFamilySupportGroupUk/?fref=ts
Regional Scotland Facebook: https://m.facebook.com/PCDfamilysupportscotland/
Twitter: https://twitter.com/PCD_UK: https://mobile.twitter.com/PCD_UK
Support Group: https://healthunlocked.com/pcdsupport
PCD Foundation
Website: https://pcdfoundation.org
Facebook: https://m.facebook.com/PCDFoundation/
Twitter: https://mobile.twitter.com/PCDFoundation
PCD Scholarship
Website: http://pcdscholarship.org
Facebook: https://m.facebook.com/PCDscholarshipfundaution/?fref=ts
PCD Smiles
Website: http://www.pcdsmiles.com
Facebook: https://m.facebook.com/PCDsmiles/
Running on Air
Website: https://runningonair.net
Facebook: https://m.facebook.com/profile.php?id=395884040577403&ref=content_filter
Twitter: https://mobile.twitter.com/Mary_RunOnAir
Blogs
Chronically Ashley
https://chronicallyashley.wordpress.com
Fighting for Air
http://fightforair.blogspot.com
PCD Fighter
https://m.facebook.com/tempo.tine/
Spoon Rest
https://spoonrestblog.wordpress.com
Running with Hope
http://rachelleandjordan.blogspot.com
Running on Air
Huffington Post PCD Authors
Jen Faulkner
https://www.huffingtonpost.co.uk/author/jen-faulkner/
The Mighty PCD Authors
Carey Kauffman
https://themighty.com/u/careykauffman/
Mary Kitlowski
https://themighty.com/u/mary-kitlowski/
Podcasts
The Chronic Hustle
Turtle Talk
http://www.pcdsmiles.com/turtle-talk-2
April Russo
https://instagram.com/aprilr17
Berkely’s Crazy Life
https://instagram.com/berkeleyscrazylife
Breathe For PCD
https://instagram.com/breatheforpcd
Breathing PCD
https://instagram.com/breathingpcd
Kristen Weinbel
https://instagram.com/kristenweinbel
PCD Australia
https://instagram.com/pcd_australia
PCD Fighter
https://instagram.com/tempo.tine
PCD Foundation
https://instagram.com/pcdfoundation
Running On Air
https://instagram.com/runningono2
Teen PCD
https://instagram.com/teen_pcd
YouTube Channels
Ellery’s Life
I Am Chloe R
https://www.youtube.com/channel/UCKT6sS5qwdfw1FvnwCAstnA
Kylee Liggatt
https://www.youtube.com/channel/UCAQseyzWOKrDCfT6U4FF_rg
My PCD Life
https://www.youtube.com/channel/UCSdVL9ErZQYPJla3qNR4FJg
Facebook Pages
Australia PCD
Website: https://pcdaustralia.org.au
Facebook: https://m.facebook.com/PCDAustralia/?fref=ts
Twitter: https://mobile.twitter.com/PCDAustralia
Breathing Together PCD/Kartagener's Cyprus
Facebook: https://m.facebook.com/pcd.cyprus/
Breathe For PCD
Website: https://www.breatheforpcd.com/what-is-pcd
Facebook: https://m.facebook.com/breatheforpcd/
Chloe R
Website: https://www.chloerfernandez.com
Facebook: https://m.facebook.com/IAMChloeR/
Ellery
Website:
Facebook: https://m.facebook.com/elleryslife/
French Primary Ciliary Dyskinesia Association
Website: https://www.adcp.asso.fr
Facebook: https://m.facebook.com/ASSODCP/
PCD Fighter
Website:
Facebook: https://m.facebook.com/tempo.tine/
PCD Foundation
Website: https://pcdfoundation.org
Facebook: https://m.facebook.com/PCDFoundation/
Twitter: https://mobile.twitter.com/PCDFoundation
PCD Scholarship
Website: http://pcdscholarship.org
Facebook: https://m.facebook.com/PCDscholarshipfundaution/?fref=ts
PCD Smiles
Website: http://www.pcdsmiles.com
Facebook: https://m.facebook.com/PCDsmiles/
PCD Style
Website: https://shop.pcdstyle.com/index.php
Facebook: https://m.facebook.com/profile.php?id=614784545331095&ref=content_filter
Running on Air
Website: https://runningonair.net
Facebook: https://m.facebook.com/profile.php?id=395884040577403&ref=content_filter
Twitter: https://mobile.twitter.com/Mary_RunOnAir
Facebook Public Groups
PCD Awareness
https://m.facebook.com/groups/731783893639556?group_view_referrer=profile_browser
PCD Foundation "One in a Million" Campaign
https://www.facebook.com/groups/williamjanton/
PCD Fundraisers
https://www.facebook.com/groups/818720318234925/
Facebook Closed Groups
Italian Association for PCD
https://www.facebook.com/groups/AIDKartagener/?ref=share
Ohio PCD Families
https://m.facebook.com/profile.php?id=1525325957700100&ref=content_filter
PCD Alabama
https://m.facebook.com/groups/978289515569317?group_view_referrer=profile_browser
PCD Australia Family Support Group
https://m.facebook.com/groups/379987042108310
PCDF Connect (PCD Foundation)
https://www.facebook.com/groups/PCDFconnect/
PCD Families Pennslyvania/NJ
https://www.facebook.com/groups/1728760464069251/
PCD Family Support
https://www.facebook.com/groups/pcdfamilysupport/?fref=ts
PCD / Kartagener Syndrom Deutschland
https://m.facebook.com/groups/1421044691482264
PCD Minnesota
https://www.facebook.com/groups/306584680287210/
PCD Support Group Ireland
https://m.facebook.com/groups/816827761779783/
PCD Western NY
https://www.facebook.com/groups/606149672829436/
Primaire Ciliaire Dyskinesie (PCD) Belgium
https://m.facebook.com/groups/201853759835111
Primary Ciliary Dyskinesia And Immotile Cilia Syndrome support
https://m.facebook.com/groups/317968495047543/?fref=ts
Turtle Talk Café
https://www.facebook.com/groups/turtletalkcafe
UK & Scotland Support Groups are not on Facebook***
Facebook Secret Groups
(links won’t work unless you’re a member of the group listed)
KS/PCD Loss Support Group
https://m.facebook.com/groups/997846333632317?group_view_referrer=profile_browser
PCD Adult Care
https://www.facebook.com/groups/453172514787251/?ref=br_rs
PCD Georgia
https://www.facebook.com/groups/753991007953358/?ref=share
PCD: Good, bad, and everything in between
https://m.facebook.com/groups/1412454918967366/?fref=ts
PCD Related Infertility Support
https://m.facebook.com/groups/684614838327644?group_view_referrer=profile_browser
Facebook Fundraiser Groups
PCD Foundation "One in a Million" Campaign
https://www.facebook.com/groups/williamjanton/
PCD Fundraisers
https://www.facebook.com/groups/818720318234925/
Websites
Australia PCD
Website: https://pcdaustralia.org.au
Facebook: https://m.facebook.com/PCDAustralia/?fref=ts
Twitter: https://mobile.twitter.com/PCDAustralia
Breathe For PCD
Website: https://www.breatheforpcd.com/what-is-pcd
Facebook: https://m.facebook.com/breatheforpcd/
French Primary Ciliary Dyskinesia Association
Website: https://www.adcp.asso.fr
Facebook: https://m.facebook.com/ASSODCP/
PCD Family Support Group UK
Website: http://pcdsupport.org.uk
Main Facebook: https://m.facebook.com/PcdFamilySupportGroupUk/?fref=ts
Regional Scotland Facebook: https://m.facebook.com/PCDfamilysupportscotland/
Twitter: https://twitter.com/PCD_UK
https://mobile.twitter.com/PCD_UK
Support Group: https://healthunlocked.com/pcdsupport
PCD Foundation
Website: https://pcdfoundation.org
Facebook: https://m.facebook.com/PCDFoundation/
Twitter: https://mobile.twitter.com/PCDFoundation
PCD Scholarship
Website: http://pcdscholarship.org
Facebook: https://m.facebook.com/PCDscholarshipfundaution/?fref=ts
PCD Smiles
Website: http://www.pcdsmiles.com
Facebook: https://m.facebook.com/PCDsmiles/
PCD Style
Website: https://shop.pcdstyle.com/index.php
Facebook: https://m.facebook.com/profile.php?id=614784545331095&ref=content_filter
Running on Air
Website: https://runningonair.net
Facebook: https://m.facebook.com/profile.php?id=395884040577403&ref=content_filter
Twitter: https://mobile.twitter.com/Mary_RunOnAir
Books
PCD Has Nothing On Me
PCD Smiles Cookbook 2017
https://shop.pcdstyle.com/index.php
https://www.amazon.com/PCD-Smiles-Cookbook-Christopher-Dale/dp/1389272915
Ebooks
PCD Has Nothing On Me
Annual Events
Drive Fore PCD
PCD Family Night/ Fall Festival
https://m.facebook.com/Pcdfamilynight/
PCD Scholarship
Website: http://pcdscholarship.org
Facebook: https://m.facebook.com/PCDscholarshipfundaution/?fref=ts
PCD Family Support Group UK
Website: http://pcdsupport.org.uk
Main Facebook: https://m.facebook.com/PcdFamilySupportGroupUk/?fref=ts
Regional Scotland Facebook: https://m.facebook.com/PCDfamilysupportscotland/
Twitter: https://twitter.com/PCD_UK
https://mobile.twitter.com/PCD_UK
Support Group: https://healthunlocked.com/pcdsupport
Medical Papers
Diagnosis, Monitoring, and Treatment of Primary Ciliary Dyskinesia: PCD Foundation Consensus Recommendations Based on State of the Art Review
https://onlinelibrary.wiley.com/doi/pdf/10.1002/ppul.23304
NTM Patient Pamphlet (Chinese)
https://www.ntminfo.org/wp-content/uploads/2018/04/chinesepamphlet_ntminfo.pdf
NTM Patient Pamphlet (Français)
https://www.ntminfo.org/wp-content/uploads/2018/04/frenchpamphlet_ntminfo.pdf
NTM Patient Pamphlet (Deutsch)
https://www.ntminfo.org/wp-content/uploads/2018/04/germanpamphlet_ntminfo.pdf
NTM Patient Pamphlet (Dutch)
https://www.ntminfo.org/wp-content/uploads/2018/04/dutchpamphlet_ntminfo.pdf
NTM Patient Pamphlet (English)
https://www.ntminfo.org/wp-content/uploads/2018/04/englishpamphlet_ntminfo.pdf
NTM Patient Pamphlet (Español)
https://www.ntminfo.org/wp-content/uploads/2018/04/spanishpamphlet_ntminfo.pdf
NTM Patient Pamphlet (Japanese)
https://www.ntminfo.org/wp-content/uploads/2018/04/japanesepamphlet_ntminfo.pdf
NTM Patient Pamphlet (Korean)
https://www.ntminfo.org/wp-content/uploads/2018/04/koreanpamphlet_ntminfo.pdf
PICADAR: a diagnostic predictive tool for primary ciliary dyskinesia
https://erj.ersjournals.com/content/erj/47/4/1103.full.pdf
Product Links
PCD Style
Merchandise; https://store.pcdstyle.com
https://www.smileecove.com/stores/cove
PCD Artist Project
Merchandise; https://www.smileecove.com/stores/cove
Smile E Cove
Merchandise; https://smileecove.com/stores/cove/
PICC Line Covers & Port Access Clothing
Breathe for PCD
Website: https://www.breatheforpcd.com/what-is-pcd
Facebook: https://m.facebook.com/breatheforpcd/
Merchandise; https://shop.spreadshirt.com/breatheforpcd/
PCD Angel Jewellry
https://m.facebook.com/PCD-Angel-Jewellery-179763778758950/
http://www.pcd-angel.co.uk/
Running On Air
Merchandise
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Sponsor a PCD Smiles Cheer-box today!
https://shop.pcdstyle.com/index.php?id_category=14&controller=category
Get your “Official” turtle care ribbon gear today!
https://www.smileecove.com/stores/cove
#PCDsmiles #PCDstyle #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #SmileEcove
#PCDawareness to help find a #cure4PCD!