Do you have experience of bronchiectasis? Join our new patient advisory group
The European Respiratory Society (ERS) is launching a number of research and awareness activities on bronchiectasis, led by experts in the field and informed by people with experience of the condition.
We are bringing together a group of people with bronchiectasis, and their partners or family members living anywhere in Europe to be actively involved to influence the development of these projects. Would you or someone you know like to get involved?
Your role would be to work together with the other members of this patient advisory group to represent the views of people with bronchiectasis in these projects in the following ways:
- Patient Priorities – informing the development of a patient-led recommendation document which will provide information on what matters to people affected by bronchiectasis and related health issues. A companion document aimed at healthcare professionals will raise awareness of the issues in bronchiectasis treatment, management and support that matter most to patients
- The Clinical Research Collaboration – being on the steering committee to make sure that what matters to patients is covered in future research, and raise awareness of the condition’s real-world impact for patients
- The Task Force to produce new clinical guidelines for the management of bronchiectasis in Europe – being on the steering committee to make sure that the experiences and needs of patients are covered by the new guidelines
- The European Bronchiectasis Roadmap for research priorities – to help design a survey to ask people affected by bronchiectasis about their priorities for future research and service development
- The iABC consortium – to help decide the content for a new website for people with bronchiectasis, and help design the clinical trial to make sure people taking part have a good experience
We aim to recruit a small group of people so that there will always be more than one person to represent the group in the different projects and at meetings. This will mean that there is not too much work for any one person, and that there are always other members of the group who can take part if you need to take a break due to your health, work or other commitments.
If you would like to be part of this advisory group, or would like some more information email us.