Patient Engagement
The BEAT-PCD ERS CRC works closely with PCD patient groups and the European Lung Foundation - ELF in an effort to further enhance the involvement of patients and caregivers in all aspects of PCD research and clinical care.
We have devoted a WP of the BEAT-PCD to the engagement of patients in PCD research. In collaboration with ELF, we are developing an online platform that allows the exchange of high quality information and experiences between patients and the dissemination of educational resources for PCD. Key educational material for PCD patients will be translated in several languages and will also be made available on the ELF website.
Patients are also invited to actively take part in the BEAT-PCD network through different actions. Among other actions, representatives of national patient organisations are invited to set-up a European committee of representatives that will be actively involved in PCD research, the BEAT-PCD advisory board includes representatives of national patient organisation while patient representatives are invited to attend all BEAT-PCD events. Furthermore, the BEAT-PCD also aims to identify the unmet needs in PCD research from the patient’s perspective towards reorienting PCD research according to patients’ priorities.
Lastly members of the BEAT-PCD network disseminate recent PCD research findings and network updates by attending meetings of national patient organisations.
If you are a patient representative who would like to join the BEAT-PCD activities, we would be pleased to hear from you. Please contact us.
Featured Events
Ressources
PCD Patient Conferences
Translated presentations and video replays of the former Patient Conferences can be found on the dedicated page.
Living with PCD - Testimonials
“Histoires de Cils” (cilia’s stories)
Informative video from the French PCD association (ADCP) describing living with PCD from several perspectives of all ages (French with English subtitles)
Testimonial video from a Spanish patient living with PCD after a lung transplant
Thanks to Cristina and PCD Spain (for providing the video (Spanish with English subtitles)..
PCD Support Groups
Bulgaria
Belgium
Finland
Cyprus
Georgia
France
Netherlands
Germany
Italy
Norway
Spain
Poland
Sweden
United Kingdom
Australia
United States of America
In his autobiography “Coughing forbidden - A Life with a Rare Disease”, Hansruedi Silberschmidt describes his life and medical path to PCD diagnosis and beyond.
Despite having typical symptoms since birth, Hansruedi was diagnosed at age 39 after repeated visits to specialists and pulmonary rehabillitation clinics. In his book he describes vividly the difficult path of a person with PCD through life, how he navigated through the labyrinth of modern medicine and how was able to participate successfully in life despite his chronic illness. This autobiography was just published and it is an empowering read for people with PCD and their families. The book is available in bookstores and online retailers, in German with the original title "Husten verboten- Ein Leben mit einer seltenen Krankheit". The ISBN number for the book is ISBN 978-3-907243-00-8.
