Welcome to Day1 of the PCD patient conference 2022! As a reminder, all presentations will be in English but translated slides are available in German, French, Greek, Spanish, Turkish and Norwegian and can be download from the beat-pcd.squarespace.com/patients as PDFs.
Depending on the availability of volunteers, not all presentations could be added for all languages, however we plan to complete all translations during or after the conference.
The meeting will not be recorded in its entirety, just parts. Expert presentations will be recorded provided they agree. Replay will be available on our website soon after the meeting.
We are launching today’s presentations with a welcome address from @beatpcd chair Myrona Goutaki @mgoutaki (@PCD_ispm). 
@mgoutaki @PCD_ispm The first Session of this patient conference will be an Introduction to PCD chaired by Amelia Shoemark @Shoemelia and Petra Tempels (KSPCD, Germany).
Dr Jobst Röhmel (@ChariteBerlin) talk will be about cilia motion: “PCD, the basics, why cilia are not moving correctly”.
Prof Amelia Shoemark @shoemelia (@UoDMedicine) is giving an update about the diagnosis of PCD and what is needed at minimum.
Great discussion between the experts and patients is on-going!
The second session of the day, chaired by Myrona Goutaki @mgoutaki and Tamar Makhatadze (PCD Support Group Georgia), will address “Living with PCD at all ages” and starts with videos from patients living with PCD.
Paolo Buonpensiero (@UninaIT)now address “How can people with PCD manage physiotherapy in daily life” highlighting the importance of airway clearance techniques. @PcdPhysio
Rik Kremer (KSPCD, Germany) is giving us a presentation on the relationship between physiotherapy and physical activity.
Perfect opportunity to remind that the International PCD Physiotherapy Network @PcdPhysio will be hosting a seminar next week on Exploring PCD physiotherapy across the world eventbrite.co.uk/e/ipcdpn-webin…
After a well-deserved short coffee break, we are back with more videos from patients living with PCD.
Very important topic now: Mental Health and PCD with Tamara Vance and Dr Anne Griffiths (@childrensmn).
We now welcome book author Hansruedi Silberschmidt (KSPCD, Switzerland) about his experience living with PCD and participating in research with @ISPMBern. ispm.unibe.ch/about_us/news/…
Amanda Harris @mandalea98 (@UHSFT) is now talking about the transition from child-centred to adult orientated health care in PCD.
More informations on the @ReadySteadyGo3 "Transition & Patient Empowerment Innovation, Education and Research Collaboration" program including content translated in many languages can be found here: readysteadygo.net
We are concluding today’s session with more patients’ videos testimonials on daily life with PCD, treatments,...
Thanks for joining us and to the patients and experts for their presentations today for the first day of our PCD patient conference 2022! We will be back tomorrow at 11:00 am CET. Replays will be available on our website soon after the meeting.
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