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 diagnosis, treatments and care in PCD as well as learning from others experiences of PCD. This conference will provide an opportunity to meet other people with PCD and contact local patient organisations. You can register here.

Conference Agenda

Day 1 - Friday, December 2nd, 13:00 - 17:30 CET:

13:00-13:10: Welcome on behalf of the organising committee & housekeeping information - Myrona Goutaki

Session 1: Introduction to PCD - chairs Amelia Shoemark, Petra Tempels

13:10-13:30: PCD, the basics, why cilia are not moving correctly - Jobst Röhmel

13:30-13:50: Diagnosis of PCD (what is needed at minimum) – Amelia Shoemark

13:50-14:10: Session discussion

Session 2: Living with PCD at all ages – chairs Myrona Goutaki, Tamar Makhatadze

14:10-14:30: Two patient videos followed by discussion

14:30-15:00: How can people with PCD manage physiotherapy in daily life- Paolo Buonpensiero/ Rik Kremer

15:00-15:20: Discussion

15:20-15:30 BREAK

15:30-15:50: Two patient videos followed by discussion

15:50-16:10: Mental Health and PCD - Anne Griffiths/ Tamara Vance

16:10-16:30: Discussion

16:30-16:50: Patient testimonial- Hansruedi Silberschmidt

16:50-17:05: Transition of care in PCD- Amanda Harris

17:05-17:15: Discussion

17:15-17:30: Two patient videos followed by discussion

End of Day 1

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Day 2 - Saturday, December 3rd, 11:00 - 15:30 CET:

Session 3 Standards of care in PCD- chairs Suzanne Crowley, Fiona Copeland

11:00-11:45: Paediatric care for PCD- Suzanne Crowley

                       Adult care for PCD - Anand Shah

                       ENT care for children and adults with PCD - Mihaela Alexandru

11:45-12:05: Discussion

12:05-12:10: Patient videos on PCD treatments

12:10-12:25: PCD treatments outside the norm - Jane Lucas

12:25- 12:45: Discussion

12:45-13:15 BREAK

13:15-13:35: The future of PCD treatments: Inclusion and exclusion criteria for research- Phil Robinson

13:35-14:05: How PCD care is set up in different countries –Fiona Copeland (UK)/Sandra Rovira (Spain)/Pinelopi Anagnostopoulou (Cyprus)

14:05-14:15: Discussion

Session 4: Bringing patients together through PCD Support Groups– chairs Laura Behan, Iliana Georgiou

14:15-14:30 Rare-E-Connect - Vicky Antoniadou

14:30-14:40 Introductions of support groups

14:40- 15:25 Break-out rooms

15:25-15:30 Closing words - Amelia Shoemark

End of the conference