PCD Foundation

08/27/2026

We are still feeling so grateful after an unforgettable week in beautiful Montreal!

All of us at the PCD Foundation are humbled by the incredible attendance, collaboration, and energy at our first Global PCD Conference. More than 350 clinicians, researchers, advocates, patients, and families gathered, united by a shared purpose. The conference also featured a special Family Day for more than 30 families, welcoming more than 380 participants across the full event.

Most importantly, the conference was a powerful reminder of what this community can do when we come together: advancing understanding, improving care, and creating hope for everyone affected by primary ciliary dyskinesia.

Thank you to everyone who joined us, shared your expertise, told your stories, asked questions, made connections, and helped make this milestone event so meaningful.

We also want to recognize the collaboration of BEAT-PCD and ERN-LUNG. This event would not have been possible without so many people and organizations working together.

The conversations and connections made in Montreal will continue to inspire our work for years to come. Next year, we’re taking the conversation to Lisbon! Save the date for October 6-10.

If you or someone you love is affected by PCD, we invite you to take the next step by signing up for the PCDF Connect registry (https://redcap.vumc.org/surveys/?s=7YXRX7JHDHFMAYJ7). Your participation helps strengthen our understanding of PCD, enables us to share information, supports research, and brings us closer to better care and treatments for the entire PCD community.

08/23/2026

08/18/2026

We are so excited to kick off the first-ever Global PCD Conference 2026 tomorrow from Le Centre Sheraton in Montreal! Follow along on our stories all week!

08/04/2026

We have launched a refreshed page on the PCD Foundation website to house educational materials for patients and families. This Educational Resources page contains our video library, as well as summaries of recently-published PCD research, guides for patients and families, and more materials available for download.

Check back periodically, as we will continue adding to the Educational Resources page as part of our commitment to ensuring you have the tools you need to better understand PCD.

Visit the Educational Resources page here: https://www.pcdfoundation.org/educational-resources/

07/28/2026

We've extended the Global PCD Conference hotel room block!

You now have until Friday, July 31 to reserve your room at Le Centre Sheraton Montreal at our special conference rate.

Book your room here: https://book.passkey.com/event/51185290/owner/17639/home

We can't wait to see you in Montreal!

07/15/2026

Join us for Family Day at the Global PCD Conference!

Patients, families, and caregivers in the Montreal area are invited to join us in person on Sunday, August 23 for a day of education, connection, and community (all attendees must be aged 16+).

Register by July 22nd to hear from PCD experts, ask questions, and connect with others in the PCD community. The program will be offered in a hybrid format with both English and French.

More information and registration available here: https://www.eventbrite.com/e/pcd-family-day-montreal-tickets-1986091645576?aff=oddtdtcreator

07/10/2026

New research led by Drs. Ricardo Mosquera and Giuseppe Colasurdo, professors of pediatric pulmonary and sleep medicine at McGovern Medical School at UTHealth Houston, sheds light on inflammation in patients with primary ciliary dyskinesia (PCD).

The study of 76 participants in Texas, Puerto Rico, and Mexico found that people with PCD had inflammation throughout the body even when they were not sick, suggesting that inflammation is an ongoing part of the disease and not only present during exacerbations. Inflammation occurring throughout the body may also help explain symptoms that patients experience outside of the lungs – such as fatigue, fever-like feelings, and abdominal discomfort.

It also found that saliva and blood showed very similar inflammatory patterns – suggesting that saliva may provide a simple, non-invasive way to monitor inflammation without requiring blood draws.

More research is needed to understand how inflammation changes in patients over time, how the 5 inflammatory subtypes that were identified can lead to personalized treatment, and whether saliva can be an effective monitoring tool, but this study is important for better understanding PCD pathogenesis.

Read the article here: https://academic.oup.com/annalsats/advance-article-abstract/doi/10.1093/annalsats/aaoag152/8703978?redirectedFrom=fulltext

07/09/2026

The inaugural Global PCD Conference, hosted by BEAT-PCD, ERN-Lung and the PCD Foundation, is just around the corner!

We can’t wait to welcome more than 300 patients, families, clinicians, researchers, and advocates from around the world to Montreal. Together, we’ll connect, collaborate, and advance the future of PCD care and research.

Registration is nearing capacity — don’t miss your chance to join this global gathering!

Register today: https://my.onecause.com/event/organizations/sf-001C000001ipOivIAE/events/vevt:f68584b5-84dd-4230-b906-66e6b7425b1c/home/story

07/01/2026

Last week, we had the privilege of attending the 9th Annual World Bronchiectasis Conference in Hannover, Germany. It was inspiring to join colleagues from around the world who are working to improve care and advance research for people living with bronchiectasis and lung diseases, including primary ciliary dyskinesia (PCD).

Today, on World Bronchiectasis Day, we are reflecting on the important connection between bronchiectasis and PCD.

Did you know? Most people with PCD have bronchiectasis – but they are not separate diseases. Bronchiectasis describes permanent damage to the airways because of an underlying disease, such as PCD. In other words, PCD or another disease are what leads to bronchiectasis. Identifying the cause of bronchiectasis in every patient is essential to providing the best care possible.

If you have PCD that has lead to bronchiectasis, we encourage you to join our PCDF Connect Registry – open to everyone with PCD. The better we can understand PCD, the less likely patients are to develop bronchiectasis. Enroll now!

https://redcap.vumc.org/surveys/?s=7YXRX7JHDHFMAYJ7

06/30/2026

Understanding PCD is essential to navigating a diagnosis. Whether you are new to the PCD community or need a refresher, our upcoming PCD Basics webinar is a great way to stay informed about the facts of the disease.

Join us on Thursday, July 23rd from 12:00 – 1:00pm EDT as Pediatric Pulmonologists Dr. Melanie Collins (Connecticut Children's) and Dr. Anne Griffiths (Children's Minnesota) talk through common PCD symptoms in both children and adults, how PCD is diagnosed, and how it affects the body. We’ll also discuss disease management strategies that help people with PCD live healthier lives.

This session is designed to provide clear, practical information and answer your questions about PCD. Register below, and be sure to review our PCD Basics information packet ahead of time!

Register: https://us02web.zoom.us/webinar/register/WN_uR0PJFijRYCE9vzTz6g_pw #/registration

PCD Basics Packet: https://drive.google.com/file/d/1Kyxz4o_IdMNJNB_EIxunOrw20My8s22D/view?usp=drive_link