06.12.2022 – More than 300 participants joined the first international patient conference on primary ciliary dyskinesia (PCD), which was co-organised by PCD support groups worldwide.
Patient involvement in research and care has been an important priority for the past few years, particularly in the field of rare diseases. In an ongoing effort to support empowerment of people with PCD and their families, we co-organised the first international PCD patient conference on December 2nd and 3rd. The conference was hosted online by ISPM Bern and was organised by the BEAT-PCD clinical research collaboration, which is co-lead by Myrofora Goutaki, by the European Lung Foundation, and 13 PCD support groups: Australia, Cyprus, Finland, France, Georgia, Germany, Italy, Norway, Spain, Sweden, Switzerland, UK and USA, in alphabetical order.
Over the course of these 2 days, more than 300 participants, mainly patients or caregivers but also healthcare professionals, connected to listen to the plenary talks, ask questions and contribute their own experiences. The conference included invited talks by a multidisciplinary group of international experts from Europe, North America and Australia on understanding better their diagnosis, standards of care, managing disease with work or studies and personal life, ongoing and future research and on bringing people with PCD together as a community. Additionally, people with PCD had a prominent role in developing the conference program, co-chaired sessions and contributed videos in several languages, making this a truly international conference organised together with people with PCD for people with PCD.