Patient empowerment through education and involvement in research: International patient conference on Primary Ciliary Dyskinesia

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29.11.2023 – More than 300 people registered at the annual international patient conference on primary ciliary dyskinesia (PCD), which was co-organised by clinicians, researchers and PCD support groups worldwide.

For the second year in a row, we co-organised on November 21st the annual international PCD patient conference. The conference was hosted online by ISPM Bern and was organised by the BEAT-PCD clinical research collaboration, which is co-led by Myrofora Goutaki, by the European Lung Foundation, and numerous PCD support groups worldwide. The conference provided up to date information on basics concepts about PCD, treatments and care, as well as learning from others experiences of PCD.  It also provided an opportunity to be updated on ongoing research, including several international epidemiological or qualitative research studies in the field hosted at ISPM Bern, and interact with other people with PCD.

More than 300 participants, mainly patients and family members, connected in real time during the day to listen to the talks, ask questions and contribute their experiences. Many more will be able to access the recordings that will be available shortly. Real-life AI-generated subtitles in multiple languages allowed more people from different countries to participate actively and benefit this year.

People with PCD had a prominent role in organising the conference and developing its program, co-chaired sessions and organised a patient panel discussion sharing their experiences on important topics around living with PCD. Patient empowerment remains always one of the main aims for BEAT-PCD and is at the forefront of all our activities.  These conferences provide an excellent opportunity for people with PCD and their families, to get information about their diagnosis and care, especially in countries where specialised information is lacking, to ask questions, discuss their concerns and exchange experiences. At the same time we continue raising awareness in the scientific community, organising annual PCD conferences and training schools, and regular training sessions for early career researchers and clinicians, such as the upcoming on December 20th, where Leonie Schreck from ISPM Bern will present part of her PhD work from the Living with PCD study (formerly COVID-PCD) on fertility and PCD and discuss together with a reproductive health specialist.