Stronger Together: Empowering PCD Patient Organisations Across Borders
October 2026 - PCD Awareness Campaign
Date: Wednesday 21 October 2026 at 6pm (CET time - Paris time)
Format: Online interactive webinar, 90 minutes
Participants: All patient organisations within BEAT-PCD Network
Session Chairs: Deepa Patel and Emilie Wattellier (BEAT-PCD WP7)
About the Seminar
Primary Ciliary Dyskinesia (PCD) is a rare, lifelong genetic condition that can have a significant impact on individuals and families from diagnosis throughout the different stages of life.
For people affected by PCD, patient organisations and support groups can provide an important source of peer connection, practical information, signposting and community support. Their role can extend from the time of diagnosis, through living with PCD and navigating healthcare services, to important life transitions such as adolescence, transition to adult care, family planning, education and employment.
Patient organisations can also play a broader role in the PCD community by helping to amplify the patient voice, raise awareness, facilitate connections between patients and healthcare professionals, and contribute to research and the development of future treatments.
However, establishing and maintaining a sustainable patient organisation can be challenging. Organisations may face issues including volunteer capacity, governance, succession planning, funding, communication, membership engagement, access to medical expertise and maintaining momentum over time.
There is an opportunity to learn from the experience of PCD patient organisations in different countries and from relevant patient organisations in other disease areas. Sharing practical examples and lessons learned can help organisations develop their own activities while identifying opportunities for greater international collaboration.
As part of the October PCD awareness campaign, this webinar will bring together patient-organisation leaders from different countries to share experiences, exchange practical approaches and explore how PCD support groups can become stronger, more sustainable and more empowered.
Session Aims
The session will:
Bring the international PCD patient-organisation community together to share practical experience, celebrate the value of patient organisations and identify opportunities for stronger, more sustainable and collaborative patient support.
Provide a platform for patient-organisation leaders to exchange best practice and for patients, families and healthcare professionals to learn how they can connect with and support these organisations.
Programme
18:00-18:05 - Welcome and introduction - Led by session chairs
18:05-18:10 - Why patient organisations matter - Short scene-setting: the patient journey, the role of peer support, information and empowerment, and the potential contribution of patient organisations to the wider PCD community
18:10-18:30 - Theme 1: Building a strong support organisation - Governance, board structure, medical/scientific advisors, roles and responsibilities, meetings, national/regional models, membership, volunteer management, succession planning
18:30-18:50 - Theme 2: Communication, engagement & visibility- Newsletters, social media, WhatsApp/online communities, websites, events, patient stories, videos, awareness campaigns, reaching newly diagnosed families and engaging younger generations
18:50-19:10 - Theme 3: Fundraising & sustainability - Membership fees, fundraising events, partnerships, grants, sponsorship, corporate relationships, volunteer capacity and maintaining long-term sustainability
19:10-19:20 - Patient organisations as partners for research & change - How organisations can contribute to research, patient registries, natural-history studies, clinical trials, research priorities and treatment development; examples from PCD and other rare diseases
19:20-19-30 - International Q&A & call to action - Audience questions, key takeaways, opportunities for collaboration and practical next steps
19:30 - Closing statement - Session chairs
Registration
PCD Support Group should receive an invitation to the webinar, if not please contact us!
PCD Patient Conference 2026
We're pleased to announce the 2026 PCD Patient Conference, taking place online over two interactive sessions:
Friday, 13 November 2026 | 6:00–8:00 pm (CET)
Topics: Research Updates & Fertility Panel Discussion
Saturday, 14 November 2026 | 9:00–11:00 am (CET)
Topics: Genetics & Daily life Panel discussion
Join patients, families, researchers, and healthcare professionals for the latest updates in PCD research, practical discussions, and opportunities to hear from experts and members of the PCD community.
Registration: follow the link
More information, including the full programme will be available soon.
We look forward to seeing you there!
PCD Expert Talk: Living with PCD study
For the latest results of the Living with PCD study from Andrea Fernandez Rodriguez and Myrona Goutaki.
Registration
Global PCD Conference 2027
Save the Date
The second Global PCD Conference jointly organized by BEAT-PCD, PCD Foundation and ERN-Lung will be held in Lisbon (Portugal) October 6-10th 2027!
More info to come!
Global PCD conference 2026 highlights
Did you miss the Global PCD conference in Montreal?
Co-organized by BEAT-PCD, PCD Foundation and ERN-Lung
Were you unable to attend the first Global PCD Conference in Montreal from August 19-22? Did you attend but need a refresher on some of the key topics discussed?
Global PCD Conference Chairs Heymut Omran, Univ.-prof. Dr med. MD (University Hospital Münster, Germany), Adam Shapiro, MD (McGill University Health Centre, Canada), and Amelia Shoemark, PhD (University of Dundee, UK) will lead us through the conference highlights: PCD biology, disease mechanisms, advances in clinical care, and much more.
Date/Time
Tuesday, 15 September @ 8:00 AM ET; 13h BST; 14h CEST
Registration
Registration link is available here
We hope you join us to reflect on the first ever Global PCD Conference, and look forward to seeing you at the second in Lisbon, October 6-10, 2027!
World Bronchiectasis Day Question Time
On World Bronchiectasis Day at 12.00 BST/13.00 CEST the European Lung Foundation will hold a special Question Time webinar featuring a panel of experts, including physiotherapists and individuals living with bronchiectasis. The panel will explore the theme “Airway Clearance” by answering questions submitted by our Bronchiectasis Patient Advisory Group (PAG)and attendees.
Topics included:
What airway clearance is and why it is important for people with bronchiectasis
Different techniques and how people can find what works best for them
How airway clearance can support exercise and staying active
Practical advice for managing airway clearance in daily life
Resources and support available through ELF and EMBARC
This free webinar is intended for people living with bronchiectasis and their family members or caregivers. However, anyone who would like to learn more about the condition is welcome to attend.
More info and registration on ELF website
EMBARC x ELF Bronchiectasis Patient Conference 2026
The 6th annual Bronchiectasis Patient Conference will take place from 10:00 to 16:00 CET on 21 March 2026. The conference is an opportunity for anyone living with or interested in bronchiectasis to learn more about the disease and how to manage it. It is organised in collaboration with EMBARC and the ELF Bronchiectasis Patient Advisory Group (PAG).
A full programme with details of all talks and topics to be included will be published soon.
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.
More info and registration here
PCD Patient conference 2025
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.
Patient partnerships in PCD research
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
World Bronchiectasis Day - Question time webinar
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)
Bronchiectasis Patient Conference 2025
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.
PCD patient conference 2024
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
ELF Bronchiectasis Patient Conference
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
PCD Patient Conference 2023
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
World Bronchiectasis Day
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.
ELF - Bronchiectasis Question Time
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.
3rd Bronchiectasis Workshop
BEAT-PCD endorses the 3rd European Bronchiectasis Workshop (EBROW 2023) which takes place between February 23rd to February 25th in Milan, Italy. The workshop aims to facilitate exchange of clinical experiences, sharing data and ideas, and expanding the network of active experts and investigators in the field of bronchiectasis and its comorbidities.
We would therefore be delighted if you would consider attending and actively contribute to the workshop. The workshop will be carried out as a hybrid event. Learn more and register here.
Virtual Bronchiectasis Patient Conference
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.