PCD Patient Conferences
On this page you can watch recordings and download slides from the annual BEAT-PCD patient conferences. To make the information accessible to as many people as possible, we also provide translations in several languages. It’s a great way to revisit talks, catch up if you couldn’t attend, and stay connected with the latest updates in PCD care and research.
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 & Patient Panel Discussion
Saturday, 14 November 2026 | 9:00–11:00 am (CET)
Topics: Genetics & Building Routines That Work / Social Functioning
Registration: follow the link
Translation: All presentations will be delivered in English. However, downloadable slides will be available in multiple translated languages, with translations made available as they are completed. In addition, automatically translated subtitles will be available to help participants follow the presentations in their preferred language. Subtitles activation instructions can be found here.
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Session 1 - Research updates
Clinical observational and epidemiological studies - Myrona Goutaki
Clinical trials - Amelia Shoemark
Session 2 - Non-respiratory aspects of PCD
Non lungs aspects of PCD - Deepa Patel
Session 3 – Genetics
PCD and genetics: making sense of the science - Neeta Lakhani
Genotype- Phenotype correlations in PCD - Johanna Raidt
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Session 1 – Aktuelles aus der Forschung
Klinische Beobachtungsstudien und epidemiologische Studien – Myrona Goutaki
Klinische Studien – Amelia Shoemark
Session 2 – Nicht-respiratorische Aspekte der PCD
Nicht-respiratorische Manifestationen der PCD – Deepa Patel
Session 3 – Genetik
PCD und Genetik: Die wissenschaftlichen Erkenntnisse verstehen – Neeta Lakhani
Genotyp-Phänotyp-Korrelationen bei PCD – Johanna Raidt
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Sessione 1 – Aggiornamenti sulla ricerca
Studi osservazionali clinici e studi epidemiologici – Myrona Goutaki
Studi clinici – Amelia Shoemark
Sessione 2 – Aspetti extra-respiratori della PCD
Manifestazioni extra-respiratorie della PCD – Deepa Patel
Sessione 3 – Genetica
PCD e genetica: comprendere le evidenze scientifiche – Neeta Lakhani
Correlazioni genotipo-fenotipo nella PCD – Johanna Raidt
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Session 1 – Actualités de la recherche
Études observationnelles cliniques et études épidémiologiques – Myrona Goutaki
Essais cliniques – Amelia Shoemark
Session 2 – Manifestations extra-respiratoires de la DCP
Manifestations extra-respiratoires de la DCP – Deepa Patel
Session 3 – Génétique
DCP et génétique : comprendre les avancées scientifiques – Neeta Lakhani
Corrélations génotype-phénotype dans la DCP – Johanna Raidt
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Sesión 1 – Actualizaciones sobre la investigación
Estudios observacionales clínicos y estudios epidemiológicos – Myrona Goutaki
Ensayos clínicos – Amelia Shoemark
Sesión 2 – Aspectos no respiratorios de la DCP
Manifestaciones extrapulmonares de la DCP – Deepa Patel
Sesión 3 – Genética
DCP y genética: comprender los avances científicos – Neeta Lakhani
Correlaciones genotipo-fenotipo en la DCP – Johanna Raidt
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Oturum 1 – Araştırmalardan güncel gelişmeler
Klinik gözlemsel çalışmalar ve epidemiyolojik çalışmalar – Myrona Goutaki
Klinik araştırmalar – Amelia Shoemark
Oturum 2 – PSD’nin solunum sistemi dışındaki yönleri
PSD’nin solunum sistemi dışındaki belirtileri – Deepa Patel
Oturum 3 – Genetik
PSD ve genetik: Bilimsel gelişmeleri anlamak – Neeta Lakhani
PSD’de genotip-fenotip ilişkileri – Johanna Raidt
PCD Patient Conference 2025
Replay of the presentations is available on our dedicated Youtube channel (click here).
All presentations were in English, however, the slides are downloadable in multiple translated languages. Presentations will be made available as translations are completed.
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Session 1 - Research updates
DPP1 inhibitors therapies - Jobst Röhmel
Anti-pseudomonas treatment - Oriol Sibila
Session 2 - Nutrition
Nutrition and chronic lung disease -Raphaëlle Varraso
Session 3 - Transition from paediatric to adult care
Transition and PCD - Guillaume Thouvenin & Amanda Harris
Session 4 - Living with PCD as an adult
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Session 1 - Actualités de la recherche
Thérapies à ARN messager (ARNm) - Claire Hogg
Thérapies par inhibiteurs de DPP1 - Jobst Röhmel
Traitement anti-Pseudomonas - Oriol Sibila
Session 2 - Nutrition
Nutrition et maladies pulmonaires chroniques -Raphaëlle Varraso
Session 3 - Transition des soins pédiatriques vers les soins adultes
Transition and DCP- Guillaume Thouvenin & Amanda Harris
Session 4 - Vivre avec la DCP à l’âge adulte
Questions spécifiques liées aux soins des adultes - Margherita Silani
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Teil 1 - Neues aus der Forschung
mRNA-Therapien - Claire Hogg (Bald verfügbar)
DPP1 – Antientzündliche Therapien - Jobst Röhmel
Behandlung von Pseudomonas - Oriol Sibila (Bald verfügbar)
Teil 2 - Ernährung & PCD
Ernährung und chronische Lungenkrankheiten -Raphaëlle Varraso
Teil 3 - Übergang von der Kinder- zur Erwachsenenversorgung
Übergang in die Erwachsenenversorgung bei PCD - Guillaume Thouvenin & Amanda Harris (Bald verfügbar)
Teil 4 - Leben mit PCD als Erwachsene
Spezifische Fragen der Erwachsenenversorgung bei PCD - Margherita Silani
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Session 1 - Actualizaciones en investigación
Inhibidores de DPP1 Terapias - Jobst Röhmel
Trataiento anti- pseudomonas - Oriol Sibila
Session 2 - Nutrición
Nutrición y enfermedades respiratorias crónicas -Raphaëlle Varraso
Session 3 - Transición pediátrica hacia el cuidado del adulto
DCP y transición - Guillaume Thouvenin & Amanda Harris
Session 4 - Conviviendo con la DCP en la etapa adulta
PCD Patient Conference 2024
Replay of the presentations can be found on our dedicated Youtube playlist (click here).
The discussions and Q&A were not recorded. All presentations were in English, however, the slides are downloadable in multiple translated languages:
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Session 1 - PCD the basics
Cilia in PCD – Amelia Shoemark
Symptoms and manifestations of PCD – Myrona Goutaki
Session 2 - Trajectories of PCD from the clinician and patient perspective
Spectrum of PCD disease severity – Claire Hogg
Session 3 - Research: Update on new therapies for PCD
Latest progress on clinical trials of mRNA therapies for PCD - Michael Loebinger
Session 4 - Management strategies for PCD
Latest advice on airway clearance techniques - Paolo Buonpensiero & Michael Davis
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Session 1 - Les basiques de la DCP
Les cils dans la DCP– Amelia Shoemark
Symptômes et manifestations de la DCP– Myrona Goutaki
Session 2 - Trajectoires de la DCP du point de vue du clinicien et du patient
Spectre de gravité de la maladie DCP– Claire Hogg
Session 3 - Recherche : mise à jour sur les nouvelles thérapies pour la DCP
Derniers progrès dans les essais cliniques de thérapies à ARNm pour la DCP - Michael Loebinger
Session 4 - Stratégies de gestion de la PCD
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Teil 1 - PCD –Einführung
Die Zilien bei PCD – Amelia Shoemark
KlinischesBild von PCD – Myrona Goutaki
Teil 2 - Verlauf von PCD aus Sicht von Experten und Patientinnen
Spektrum des Schweregrads der PCD-Erkrankung – Claire Hogg
Teil 3 - Forschung: Update zu neuen Therapien für PCD
Neueste Fortschritte bei der klinischen Erprobung von mRNA-Therapien für PCD - Michael Loebinger
Teil 4 - Behandlungsstrategienfür PCD
Die neuesten Empfehlungen zu Techniken zur Atemwegsreinigung - Paolo Buonpensiero & Michael Davis
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Sesión 1 - PCD the basics
Los cilios en DCP– Amelia Shoemark
Manifestaciones y síntomas de la DCP – Myrona Goutaki
Sesión 2 - Trajectories of PCD from the clinician and patient perspective
Espectro de severidad en la DCP– Claire Hogg
Sesión 3 - Research: Update on new therapies for PCD
Últimos avances en ensayos clínicos de terapias de ARNm para la PCD - Michael Loebinger
Sesión 4 - Management strategies for PCD
PCD Patient Conference 2023
Replay of the presentations can be found on our dedicated Youtube playlist (click here).
All presentations were held in English. We thank again G. Restad for her presentation about living with PCD. For privacy, the video replay won’t be available.
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1 - What is PCD - Basics - S. Crowley
2 - Therapies/management including new treatments:
3 - Research updates:
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1 - Quest ce que la DCP - les bases - S. Crowley
2 - Les thérapies, incluant les nouveaux traitements :
2b - Adultes - F. Ringshausen (bientôt disponible)
3 - Mise à jour de la Recherche :
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1 - Was ist PCD? - Grundlagen - S. Crowley
2 - Therapien & Behandlung (inkl. neuer Behandlungsansätze):
2b - Erwachsene - F. Ringshausen (Bald erhältlich)
3 - Update zur Forschung :
3c - Forschungsschwerpunkte und Kohortenstudien - M. Goutaki
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1 - ¿Qué es DCP? - basicos - S. Crowley
2 - Terapias/manejo incl. nuevos tratamientos :
2b - Adultos - F. Ringshausen (disponible pronto)
3 - Actualización en investigación :
3c - Prioridades en investigación/ estudio de cohortes - M. Goutaki
PCD Patient Conference 2022
The videos replay is available on the dedicated YouTube playlist (click here)
Presentation materials have been translated into German, French, Greek, Spanish, Turkish and Norwegian and can be download from the links below as PDFs. Depending on the availability of volunteers, not all presentations could be added for all languages.
Translated presentations : English: Day 1 Day 2 - German: Day 1Day 2 - French: Day 1Day 2 - Greek: Day 1Day 2 - Spanish: Day 1Day 2 - Turkish: Day 1Day 2 - Norwegian: Day 1Day 2 - Italian: Day 1Day 2
Finally, we are grateful to PCD Support UK for providing most of the PCD management videos.
PCD Patient Conference 2021
BEAT-PCD Patient Engagement: call with PCD support groups and ELF
On Friday 29/10/2021, the first online meeting of BEAT-PCD with the European Lung Foundation and representatives from PCD support groups from different countries, took place.
During the meeting, Dr Jobst Röhmel had the opportunity to present the aims and progress of the WP3 “Patient Engagement Activities” Work Package while other members of the ERS BEAT-PCD network presented several ongoing research activities involving patients across Europe. More specifically, Dr Laura Behan talked about the development of the PCD patient education survey, Dr Eva Pedersen presented an update on the COVID-PCD study while Dr Myrona Goutaki presented an ongoing study investigating priorities for PCD research from the experts and the patients’ perspective.
