We are looking for people with experience of childhood bronchiectasis to provide parent and patient input into a new research project and to expand our current group of parents and patients who make up our Childhood Bronchiectasis PAG (Parent/Patient Advisory Group).
This new project is called Child-BEAR-Net which stands for Children’s Bronchiectasis Advocacy Research Network and is a Clinical Research Collaboration (CRC) funded by the European Respiratory Society (ERS) for three years. It brings together different stakeholders including healthcare professionals, researchers, funding partners and parents and patients to advance science and clinical research for people diagnosed with bronchiectasis as children.
PAG members act as a supporting panel of parents and patients and we will ask for your experiences and views throughout the course of the project on a range of planned patient input activities. This will be conducted through email correspondence and two planned video-conference meetings a year.
If you are a parent of a child with bronchiectasis or you are a young adult who was diagnosed with bronchiectasis as a child, and are interested in getting involved, please get in touch with firstname.lastname@example.org. Current PAG members are from Australia, Italy, UK and USA and we would welcome individuals from these and other countries too.
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ELF is a non-profit organisation registered as a UK company (VAT no. GB 115 0027 74) and charity (no. 1118930).
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European Lung Foundation's TR ID number in the Transparency Register is: 094039644810-79
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