PCD Smiles' Primary Ciliary Dyskinesia Resource List

PCD Resource List

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             Organizations

                        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/

 

                        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/

 

                        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

 

            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

                                    https://runningonair.net/blog

 

            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

                                    https://open.spotify.com/show/71CYcLa7zfwcCfF6xleQRm?context=spotify%3Ashow%3A71CYcLa7zfwcCfF6xleQRm&si=fQUlD_vFRiSfvU92WPBECg&nd=1

 

            Instagram

                        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

                                    https://m.youtube.com/user/elleryslife?itct=CBYQ6p4EIhMIsJDCiYTV4gIVZ4fCAR0anAX0&csn=eB75XJvKFYOejQS7p4-ADQ&wlfg=true

 

                        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

 

                        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

                                    https://www.amazon.com/Pcd-Has-Nothing-Chloe-Fernandez/dp/1489707085/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1559834183&sr=1-3

 

                        PCD Smiles Cookbook 2017

                                    https://shop.pcdstyle.com/index.php

                                    https://www.amazon.com/PCD-Smiles-Cookbook-Christopher-Dale/dp/1389272915

                                    https://www.amazon.com/Pcd-Smiles-Cookbook-Christopher-Dale/dp/1389272923/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=&sr=

 

            Ebooks

                        PCD Has Nothing On Me

                                    https://www.amazon.com/Pcd-Has-Nothing-Chloe-Fernandez-ebook/dp/B07922JZ9Y/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=1559834183&sr=1-3

 

            Annual Events

                        Drive Fore PCD

                                    https://www.driveforepcd.com

 

                        PCD Family Night/ Fall Festival

                                    https://m.facebook.com/Pcdfamilynight/

 

                        PCD Scholarship 

                                    Website: http://pcdscholarship.org

                                    Facebook: https://m.facebook.com/PCDscholarshipfundaution/?fref=ts

 

            Twitter

                        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

                        Breathe For PCD Merchandise

                                    https://shop.spreadshirt.com/breatheforpcd/

 

                        Custom Skins for Hillrom 105 Vest Machine

                                    https://www.skinit.com/create-your-own/custom-skins/medical-device-skins/hill-rom/custom-hill-rom-airflow-device-105-skin

 

                        PCD Angel Jewellry

                                    https://m.facebook.com/PCD-Angel-Jewellery-179763778758950/

                                    http://www.pcd-angel.co.uk/

                       

                        PCD Style Merchandise

                                    https://shop.pcdstyle.com/index.php             

 

                        PICC Line Covers & Port Access Clothing

                                    https://www.careandwear.com

 

                        Running On Air Merchandise

                                    https://shop.spreadshirt.com/PCDF/

 

                        Smile E Cove

                                    https://smileecove.com/stores/cove/

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