Join us for a virtual gathering of patients, caregivers, and healthcare professionals to learn, connect, and support one another in navigating life with Primary ciliary dyskinesia. Our conference will feature informative and interactive sessions and opportunities to engage with experts in the field. We will cover the latest research updates, living with PCD, treatments, nutrition and transition from childhood to adulthood with PCD. Don't miss out on this chance to come together as a community.

Registration

Follow the link to register here

Agenda

The program is now available here for download

Content

The presentations slides and agenda will be available ahead of the day and translated in additional langages (French, German and Spanish). Check our dedicated page for PCD patients conferences.

Lucy Dixon, volunteer and past chair of PCD support UK and member of the BEAT-PCD management committee, and Myrona Goutaki, researcher and co-chair of BEAT-PCD take the opportunity to discuss about partnerships between researchers and people living with PCD, as part of the PCD awareness month 2025.

Register here

Patient involvement is nowadays a focal point in health research. Although much progress has been made to set up a good framework and encourage active involvement and engagement of people with lived experiences in research, we still need to take further steps to achieve meaningful partnerships. In this webinar, the two speakers, who have collaborated on several projects, including the participatory Living with PCD study and an international survey on patient priorities for PCD research, discuss the value of patient engagement and involvement to the researchers and to the patient partners, share their experiences, and give advice on how to improve collaborations between patients and researchers and on selecting and maintaining patient partners in PCD research.

Target audience - People living with PCD and their family members who are interested to be actively involved in research and researchers who are interested to develop PCD projects with patient involvement and engagement

Live Translation

Please find a guide here on how to turn on live AI-translated subtitles in Zoom

The PCD Annual Research Meeting 2025 convenes researchers, clinicians, and healthcare professionals dedicated to Primary Ciliary Dyskinesia (PCD). Organized by BEAT-PCD and ERN-Lung, this meeting provides a valuable forum for sharing the latest advancements in PCD research, encompassing both fundamental science and clinical practice.

Registration

Registration for the PCD Annual Research Meeting 2025 is now open via our partner, Lena Events (click here to register)

The meeting will be followed by a social dinner. Reservations can be made on the registration page. Further details will be provided shortly before the event.

Program

The final programme is available here

How to reach the venue

The meeting will take place at: Amsterdam UMC – VUmc (Vrije Universiteit Medical Center) De Boelelaan 1117, 1081 HV Amsterdam – Amstel-Zaal room

The venue is easily accessible by public transport:

• Tram: line 24 → stop De Boelelaan / VU

• Bus: lines 62, 242, 341, 346, 348, 358 → stop De Boelelaan / VU

• Metro: lines M50, M51, M52 → stop Amsterdam Zuid

For any help regarding the route to take to get to the Amsterdam UMC, we suggest you use the official website for public transport in the Netherlands: https://9292.nl/en/

To celebrate World Bronchiectasis Day 2025, EMBARC and the European Lung Foundation (ELF) are hosting another Bronchiectasis Question Time event - a free 1-hour Q&A webinar aimed at patients, their families and caregivers (although anyone interested in learning more about bronchiectasis is welcome to attend).

This year, we will be exploring the theme 'Educated and Empowered: how to take control of your bronchiectasis'

Participants will have the opportunity to submit their questions in advance (and live during the session via the chat function) and get advice from an international panel of bronchiectasis experts and people living with bronchiectasis. The event will be held in English with translated captions in multiple languages.

Event Details:
📅 Tuesday, 1 July 2025
🕒 15:30–16:45 CEST
📍 Online – Free Registration Required

For more details and to register, please click here: World Bronchiectasis Day - Question time webinar (ELF website)

Register here

What is this session about?

Within the ERS BEAT-PCD Clinical Research Collaboration, the Work Package 7 (WP7) “Improving PCD diagnosis” team systematically reviewed the literature to identify studies that used artificial intelligence (AI) and/or digital-automated applications to improve screening, diagnosis and characterization of PCD.

During this session, Dr Claire Jackson and Dr Panayiotis Kouis will present the key findings of this review and highlight other WP7 activities.

About the Speakers:

Dr Claire Jackson has developed cilia imaging and advanced nasal epithelial cell modelling and a bio-resource of rare airway samples at Southampton since 2007. She has contributed >35 papers, 40 conference abstracts and a book chapter (>2300 citations) in PCD, ciliated epithelial cell biology and airway microbial infection. Dr Jackson’s current research is funded by Great Ormond Street Hospital Charity, Allergy Asthma & Immunology Research Charity, LifeArc and European/Italian Space Agencies. Dr Jackson leads WP7 Work Packages — BEAT-PCD  for the international ‘BEAT-PCD Clinical Research Collaboration’ network and has previously delivered expert Training — BEAT-PCD, and spoken at the British Thoracic Society Winter Meeting and University College London Rare Ciliopathies Symposium. She also supports patient education initiatives provided via PCD Support UK PCD Live!. 

Dr Panayiotis Kouis is a visiting Lecturer and a member of the Respiratory Physiology Laboratory at the Medical School of the University of Cyprus. He has been involved in PCD diagnostic testing since his PhD studies, and he is now co-chairing the BEAT-PCD WP7. He has background in evidence synthesis methodologies such as systematic review, meta-analysis and cost-effectiveness analysis, and participated in the development and adaptation of guidelines in the field of PCD and elsewhere. Dr Kouis recently delivered an WP7 ERS task force collaborative project to develop PCD patient/carer information on nasal nitric oxide testing for clinic distribution and patient support groups, based on the newly published standards Nasal nitric oxide measurement in children for the diagnosis of primary ciliary dyskinesia: European Respiratory Society technical standard - PubMed. Panayiotis is currently developing multiple translations for wider clinical use in collaboration with patient support groups worldwide.

We are excited to share details of the next IPCDPN webinar: 
Measuring outcomes in PCD
Tue 29 Apr 2025 1:00 PM - 3:00 PM BST Online, Teams

Programme:

1:00-1:10 Welcome and interactive survey

1:10-1:45 The use of outcome measures in PCD research, Dr Bruna Rubbo

1:45-2:30 Outcome measures for airway clearance techniques in chronic suppurative lung disease, Dr Gemma Stanford

2:30-3:00 Discussion

Register for your free place here

Register here

What is this session about?

We will hear about projects to improve PCD diagnostics by defining its underlying genetic causes. Two researchers involved in these developments will briefly overview the contribution of genetics to modern PCD diagnostics, and describe two important initiatives to improve genetic diagnostics: (1) the BEAT-PCD ClinGen collaboration which aims to better understand and curate the full complement of PCD genes and define what we consider a disease-causing variant; (2) CiliaVar, a freely accessible online catalogue of PCD-causing gene variants and their association with specific clinical features.

About the Speakers:

Hannah is a Professor of Molecular Medicine at University College London. Her research group uses PCD patient sequencing and functional studies to understand the molecular genetic basis of PCD, bronchiectasis and male infertility. Her lab develops PCD diagnostic gene panels and RNA-based genetic therapies for PCD. Hannah co-chairs the ClinGen ‘Motile Ciliopathy’ Expert Panel with Marie Legendre and is part of the BEAT-PCD Work Package 2 team working to develop the CiliaVar database. She is in the UK Cilia Network leadership team and is chair of Ciliopathy Alliance, interacting regularly with patient groups as a science advisor.

Mafalda is doing her PhD in the Mitchison Lab at University College London, where her research focuses on advancing the understanding of the genetic causes of PCD. Her work combines cell culture techniques and bioinformatics analyses to unravel the complex mechanisms underlying PCD. She has a background in variant and gene curation, developed through her MSc in Genomic Medicine at Imperial College London and her work experience at Genomics England and Veritas Genetics, where she analysed Next Generation Sequencing data for the diagnosis and screening of various inherited disorders.

The 5th annual Bronchiectasis Patient Conference will take place from 10:00 to 16:00 CET on 15 March 2025. The conference is an opportunity for anyone interested in bronchiectasis to learn more about the disease and how to manage it. It is organised in collaboration with EMBARC and European Lung Foundation Bronchiectasis Patient Advisory Group (PAG).

Registration and information (including programme) here

The event will cover topics including: 

• An overview of bronchiectasis   

• Managing bronchiectasis and long-term infections  

• Cross-infection risks for people with bronchiectasis  

• Physical activity and self-management 

• Am I getting worse or am I just the same?  

• Artificial Intelligence (AI) generated information about bronchiectasis  

• Latest research and findings from clinical trials 

 We will hear from people living with bronchiectasis and healthcare professionals. Attendees will have the opportunity to ask questions to the speakers and experts via the chat.

Friday, 29 November 2024 from 14:00 to 18:00 (CET)

The BEAT-PCD patient conference will take place online and is organised jointly by patients with PCD and their families, researchers and clinicians. We aim to provide up to date information on the basics of PCD, living with PCD, research updates, treatments for PCD as well as learning from others experiences of PCD. This conference provides an opportunity to meet other people with PCD and contact local patient organisations.

The agenda can be downloaded here

Registration is opened on the Eventbrite page (click here)

Instructions on how to turn on the automatic translation within Zoom is available (click here)

More information about this year and previous years patient conferences can be found on the dedicated page

Registration

Follow the link to our partner Lena Event page

Program

The program can be downloaded here

The meeting will be live-streamed on the Lena Event page for pre-registered participants.

Industry supporters

Endorsements 

Patient perspective: What’s needed for multidisciplinary PCD care?

Register Here

What is this session about?

This is a panel discussion where we will hear from an adult with PCD and a parent of a child with PCD sharing their thoughts on "What's needed for multidisciplinary PCD care?". We encourage people from all backgrounds to join. Therewill be opportunities to raise questions, make comments and discuss. 

About the Panel:

Emilie is a patient with PCD. She is 54 and discovered her pathology at the age of 45. Since then, Emilie has actively tried to understand better PCD, to try to manage it better. Since September 2022, she has been an active board member in the French association ADCP, and is currently in charge of research. Emilie is keen to participate personally also in research on PCD and try to devote some time to it, in addition to her full-time job at the European Commission, to being a mum of 2, to manage her PCD daily and above all to living a happy life!

Fiona is Mum to two adult children who both have (PCD). She chaired the PCD Support Group between 2005 and 2021 where she helped transform the care of patients with PCD in the UK and contributed to global change in diagnostics and management of PCD. She was awarded a British Empire Medal for raising awareness of PCD in the 2021 New Year’s Honours. Fiona also chaired the Respiratory Biomedical Research Patient Group at the Royal Brompton for many years.  And continues to represent patients on the Respiratory GeCip for the 100k Genomes project, European Lung Foundation,British Lung Foundation, Bronchiectasis UK as well as being  trustee of the Ciliopathy Alliance. Fiona has been a patient representative for a number of research projects and still take an active role in the following projects: Covid-19 and PCD,  the CLEAR Trial and very recently EMIRATES – a focus group for producing leaflets for thyroid cancer patients. She also regularly speaks to students about living with a genetic condition.

Join the Ciliopathy Alliance for their 2nd webinar on Monday, 3rd June 2024 from 1 p.m. to 2.30 p.m. to learn about:

• The latest research into RP (Dr. Roly Megaw, University of Edinburgh) 

• The patient's perspective re sight loss research for Usher patients (Steve White, Cure Usher)

Register here and you will receive a confirmation email containing links on how to join the meeting.

Adult PCD Clinical Cases

Register here

What is this session about?

During this interactive session, you will hear several interesting adult PCD clinical cases presented by early career researchers. For each case speakers will provide details on the patient’s present history, past history, diagnostic testing, and more exciting facts leading to final diagnostic outcome. Throughout there will be opportunities to raise questions, make comments and discuss.

About the Expert Moderator:

Natalie Lorent works as a consultant in Respiratory Medicine/Clinical Infectiology at the University Hospitals Leuven where she coordinates the care for adults with bronchiectasis and primary ciliary dyskinesia. She is also heavily involved in CF care and has a special interest in mycobacterial infections. She is an active member of the BEAT-PCD network and the focal point for ERN-LUNG for bronchiectasis and PCD at UZ Leuven.

The European Lung Foundation (ELF) Bronchiectasis Patient Conference will return on 23 March 2024, following the success of last year's event. 

This free online event will be beneficial for professionals to attend and is open to anyone interested in learning more about bronchiectasis. It will provide insight into the latest clinical findings, treatment and research, alongside real-life patient stories, plus resources and information to help patients live their life well.  

The conference has been developed with and supported by EMBARC, a pan-European network and the ELF Bronchiectasis Patient Advisory Group. A live transcription service will allow participants to generate captions in more than 50 languages.

Please promote this event to your network and to friends, relatives, family doctors, clinicians and anyone you feel would be interested in finding out more about bronchiectasis.

click here to register

ERS Webinar: Nasal nitric oxide measurement in children for the diagnosis of primary ciliary dyskinesia: a European Respiratory Society technical standard

Find out more and register

11 March, 2024 - Online - 17:00–18:00 CET

Chair: Dr Myrofora Goutaki (Bern, Switzerland)
Speakers: Dr Nicole Beydon (Paris, France), Prof. Dr Jane Lucas (Southampton, United Kingdom)

Fees: Free for ERS members / €10 for non-members
Find out more about becoming a member

Educational aims

In this session, we will present the ERS Technical Standard of the measurement of nNO in children. The session will provide all the necessary information for people wishing to develop the measurement of nNO in children suspected of PCD. It will also give tools on how to express and interpret results.

Topics

• Describe the different techniques and methods used to measure nNO in children, their advantages and disadvantages.

• Explain the effect of the environment on nNO measurement and how to deal with it.

• Propose a standard report and explain how to interpret the results.

Target audience:

• Clinicians

• Laboratory technicians

• Nurses performing the test

• Respiratory scientists

Format

This webinar will include 45-minute of lectures, followed by a final round table discussion for 15 minutes.

Learning outcomes

After following this webinar, participants should be able to:

• Set-up the measurement of nNO in their centre

• Perform nNO measurement in children from the age of one year

• Report and interpret the results

Join us for the next IPCDPN webinar to find out more about current research projects happening in the world of PCD!

Register here

13.00 - Introduction

13.05 - 'The latest in exercise research for people with PCD'

Anne Marie Lee, Associate Professor at Monash University, in Melbourne, Victoria (Australia)

13.35 - 'Assessing the effects of personalised airway clearance techniques in children with PCD'

Lynne Schofield, Paediatric PCD Physio and Clinical Doctoral Research Fellow. Leeds Teaching Hospitals and University of Sheffield (UK).

14.05 - 'Spring-cleaning the PCD airway: presentation of CLEAN-PCD results and discussion of geographical differences in standards of ACT'

Dr. Felix C. Ringshausen, Senior Physician, Hannover Medical School (Germany)

14.30 - 'Status of PCD physiotherapy in the USA'

Michael Davis, Associate Professor of Pediatrics, Riley Hospital for Children at Indiana School of Medicine (USA)

14.55 - Close

Paediatric PCD Clinical Cases (17:30 CET)

Register here

What is this session about?

During this interactive session, you will hear several interesting paediatric PCD clinical cases presented by early career researchers. For each case speakers will provide details on the patient’s present history, past history, diagnostic testing, any other relevant information and final diagnostic outcome. Throughout there will be opportunities to raise questions, make comments and discuss.

About the Expert Moderator:

The session will be moderated by Dr Guillaume Thouvenin, a Paediatric Pulmonologist involved in PCD diagnostics and treatment for more than 10 years. He coordinates the CF and Rare Lung disease Center at Armand Trousseau University Hospital in Paris. He leads the French PCD workpackage group with Prof Bernard Maitre. He is also an active management member of the international BEAT-PCD network.

Register here

In this course, the attendees will learn what patient and public involvement in research is and the evidence which shows that it is effective. The course will help to understand how patient and public involvement differs from research participation, explore different ways in which patients can provide input, its best practices, and challenges.

Topics

The course will focus on the development of following questions:

1. What is patient involvement and what value can it bring?

2. How can patients be involved in research projects?

3. Exploring PPI in practice: case studies from EMBARC and BEAT-PCD

4. Understanding best practices in PPI, in order to ensure a good experience for those involved

5. Where to start? Practical tips for starting to involve patients and the public in research

Format

• Lectures

• Q&A discussions

Please note that all timings are in Central European Time (CET).

Recording of the session will be made available to registered participants after the event.

Target audience

• Early career members

• Clinicians

• Post-graduated students

• Other health-related professionals

Accreditation

An application will be submitted to the European Board for Accreditation in Pneumology (EBAP) for CME accreditation of this event. The number of credits that you will receive will correspond to the time you spend viewing the sessions live.

Fertility and PCD

Register HERE

What is this talk about?

We know little about fertility among people with primary ciliary dyskinesia (PCD). Prof Dr Sophie Christin-Maitre and Ms Leonie Schreck will give an overview of global infertility, its different causes and potential treatments, including the use and value of artificial reproductive technology for people with PCD and they will summarize current epidemiological evidence on the prevalence of infertility and ectopic pregnancies among people with PCD.

About the speakers:

Leonie Schreck is a medical doctor and PhD student at the University of Bern. She studies different topics important to people with PCD such as fertility, using questionnaire data directly collected from people with PCD. She manages the participatory study Living with PCD (formerly COVID-PCD) under the lead of Prof Claudia Kuehni. Living with PCD is an online study set up during the COVID-19 pandemic and enrols people with PCD from all over the world. The study team has recently sent out a fertility questionnaire to all participants and has collected information about fertility and fertility care from 384 people with PCD.

Sophie Christin-Maitre is MD, PhD, Professor of endocrinology in Sorbonne University, Paris, France. She is specialized in reproductive medicine. She is the head of the Endocrinology, Diabetes and Reproductive Medicine Unit in St Antoine hospital in Paris. She coordinates a center for patients with rare diseases, especially patients with primary ovarian insufficiency and Turner syndrome. She is vice-dean of student’s life in Sorbonne University.

After a successful first patient conference in 2022, the BEAT-PCD patient conference will take place again this year online on Tuesday November 21st at 14:00 CET, organised jointly by patients with PCD and their families, researchers and clinicians.

You can register for free here

We aim to provide up to date information on basics concepts about PCD, treatments and care in PCD as well as learning from others experiences of PCD.  This conference will also provide an opportunity to be updated on ongoing research, meet other people with PCD and contact local patient organisations.

All presentations will be held in English, however we aim to provide the slides at the beginning of the conference in English, German, French and Spanish, on our website. In addition, we will use an AI closed caption software that translates English in many languages, to support joiners from several countries. We will share instructions at the day of the conference. Please keep in mind that the software is imperfect and cannot always pick up words and phrases correctly. We cannot check and correct some of the translations, but we still hope it will allow more people to follow the talks and discussion.

The agenda can be downloaded here (English)

Agenda également disponible en Français ici

Das Programm gibt es hier auf Deutsch

Programa disponible aquí en español.

Genotype-phenotype associations in PCD

Wednesday, October 4th 2023, 17:00 CEST

Register HERE

What is this talk about?

For this complex topic, we will have two PCD experts sharing their knowledge with us: Hannah Mitchison focusing on genotypes and Myrona Goutaki on phenotypes.

About the speakers:

Hannah Mitchison is a Professor of Molecular Medicine at University College London, working to understand the genetic basis of PCD using human genetics, model systems and functional studies, with recent focus on developing genetic therapies. Hannah leads in the UK Cilia Network, 100,000 Genomics Project GeCIP Subdomains and is a founder of the EMBO ‘CILIA’ Conference series. She co-chairs the ClinGen Motile Ciliopathy Gene Curation Expert Panel, also BEAT-PCD WP2 which aims to develop CiliaVar, the first online PCD gene variant database. She works with patient groups, including as chair of Ciliopathy Alliance and on the PCD Research science board.

Myrona Goutaki is a senior clinical epidemiologist at the University of Bern, working to understand the clinical variability and disease course of PCD, using data from collaborative cohort studies. She leads the EPIC-PCD cohort that focuses on upper airway disease and its associations with lower respiratory disease in people with PCD and several other projects, which use qualitative and quantitative methodological approaches to explore important questions raised by people with PCD and the PCD scientific community. She is the co-chair of the BEAT-PCD clinical research collaboration and the chair of the paediatric respiratory epidemiology group of the European Respiratory Society.

Live Stream here: BEAT-PCD/ERN-LUNG Meeting & Training school 2023 (lena.events)

Audience: Researchers, Clinicians, Scientists, AHPs and early career members with an interest in diagnosis and management of the inherited motile ciliopathy Primary ciliary dyskinesia.

Meeting Objectives:

• Update members of the PCD community on the latest research and European initiatives

• Provide opportunity  to get involved in shared projects and goals and build on important international collaborations, crucial in rare disease research

• Involve and encourage early career members in PCD research

• Learn from people with PCD about research priorities: patients are central to our objectives

Download the program here

World Bronchiectasis Day is held annually on the first of July. Each year, organizers from around the world coordinate activities to increase awareness for bronchiectasis in hopes of identifying the many undiagnosed patients living with bronchiectasis. World Bronchiectasis Day is organized by an international planning committee co-chaired by Tim Aksamit, MD, Medical Director of Bronchiectasis and NTM 360 at the COPD Foundation, and Professor James Chalmers, MBChB, PhD, EMBARC Chair and British Lung Foundation Chair of Respiratory Research, University of Dundee. The global planning committee comprises patient advocates, representatives from collaborating global patient advocacy organizations and professional societies, and leading experts. Its aim is to raise global awareness, share knowledge, and discuss ways to reduce the burden of bronchiectasis for patients and their families worldwide.

Register here

This event will take place on Friday 30 June at 15:00-16:00 British Summer Time.  In the run up to World Bronchiectasis Day (1 July), ELF want to raise awareness about bronchiectasis around the world.

You can submit your questions to a panel of bronchiectasis experts when you register for this free event.

The experts will answer as many of these questions as they can during the 1-hour webinar. 

The webinar will be recorded and made available on the ELF website after the event.