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

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)

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

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

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.

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.

The first ever ELF-EMBARC Virtual Bronchiectasis Patient Conference will take place on Saturday 27 February 2021. The conference will give people with bronchiectasis and their families and friends an opportunity to hear patient-focused talks. Talks will be delivered by expert healthcare professionals in the field and individuals with bronchiectasis.

Talks will cover the following topic areas

Basics of bronchiectasis

Treatment and self-management

Latest research

COVID-19

The conference is free and open to anyone. All the talks will be in English but we aim to host some smaller discussion groups in different languages during the day. There will also be lots of opportunities to ask questions throughout the day.

For additional information and registration details, click here.