PATIENT PARTNERS & RESOURCES
One of the keys to EMBARC’s success has been the support of it’s patient partner – The European Lung Foundation (ELF) – and their bronchiectasis patient representatives.
This partnership has allowed EMBARC to provide the first “patient voice” for those with bronchiectasis in Europe, with all EMBARC projects and meetings now involving patient representatives.
European Lung Foundation & the Bronchiectasis Patient Advisory Group
EMBARC
is proud to work with the European Lung Foundation (ELF) – an patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance the diagnosis and treatment of lung conditions – and their ELF Patient Advisory Groups (PAGs).
PAGs make up a group of individuals, including patients and their caregivers, who have an interest in a particular lung condition or topic related to lung health.
Members of Bronchiectasis PAG collaborate with EMBARC on a range of projects to raise awareness of bronchiectasis and improve the management of disease, whether this be through input into the creation of treatment guidelines and clinical task forces, the design of clinical trials or by initiating patient-led research projects into topics that are of particular interest to the patient community.
To meet the current members of the ELF Bronchiectasis PAG, click the image below:
To find out more about the collaboration between EMBARC and the ELF, and learn from the experience of EMBARC and the ELF in establishing the Bronchiectasis PAG and engaging this group in the conception of European treatment guidelines, an international registry and a series of research studies, click on the article to the right:
EMBARC/ELF Patient Resources
The collaboration between EMBARC, the ELF and the Bronchiectasis PAG has led to many impactful resources for patients, including…
The Bronchiectasis Patient Checklist
The Bronchiectasis Self-care Guide
The Annual Bronchiectasis Patient Conference
This guide has been written by people with bronchiectasis to help others living with this condition.
The guide highlights why self-care is so important in being able to live well with bronchiectasis and discusses key self-care topics including physiotherapy, exercise, diet, coping with breathlessness and fatigue, and taking care of your mental health.
The Bronchiectasis Self-care Guide is also available to download in Italian.
This checklist details what most patients with bronchiectasis should expect from their care and allow patients to better understand their condition and advocate for their own clinical care.
Patients can discuss the recommendations on the checklist with their specialists, doctors or nurses and keep track of each recommendation by ticking it off the checklist.
The Bronchiectasis Patient checklist is also available to download in German, Greek, French, Polish & Romanian.
Every year, the ELF and EMBARC run this free, online conference for anyone interested in bronchiectasis to learn more about the disease, gain insights into the current research taking place in bronchiectasis, and get advice on how to better manage the disease from the world’s expert healthcare professionals and from patient’s themselves.
The conference is held in English, with live transcription in over 60 languages.
To learn more, register to attend this year’s Bronchiectasis Patient Conference, or watch previous editions of the conference, visit: https://europeanlung.org/en/get-involved/events/bronchiectasis-patient-conference-2025/
Bronchiectasis Question Time
Recommendations for Travelling with Bronchiectasis
More resources coming soon...
This free 1-hour webinar is aimed at people with bronchiectasis and their family members/caregivers, giving them the opportunity to ask questions to a panel of bronchiectasis experts.
The audience can pre-submit their questions after registering for the webinar, or can ask their questions live via the online chat, and the experts answer as many questions as they can during the webinar.
The Question Time Webinar takes place on the lead up to World Bronchiectasis Day (July 1st).
To watch the previous edition of the Question Time Webinar, visit https://europeanlung.org/en/get-involved/events/bronchiectasis-question-time/
These recommendations were made based on the answers 26 bronchiectasis experts gave in response to a questionnaire generated by bronchiectasis patients asking for their advice on a series of travel-related concerns felt by those with bronchiectasis.
Healthcare professionals gave their expert recommendations on:
- Safety of travel, including choice of destinations and activities
- Choice of travel insurance
- Carrying medications and devices, and how to store medications properly
- Maintaining regular treatments in transport
- Documentation to be provided
- Oxygen requirements
Research Publications
Since it’s beginning, the partnership between EMBARC, ELF and it’s Bronchiectasis PAG has been very successful.
Alongside educational resources for patients, the collaboration has also provided insights into patient research priorities and has unveiled areas where research is lacking, driving more research being conducted into these areas.
This has been largely driven by the creation and distribution of large-scale patient surveys – produced by patients, for patients – to better understand the bronchiectasis patient experience and what research topics matter to the patient community.
The results of such patient surveys have resulted in high-impact publications:
Main Finding:
The EMBARC/ELF patient survey shows a need for increasing the availability of, and access to, expert bronchiectasis care and services.
To read the full article, visit: https://publications.ersnet.org/content/erj/64/1/2301504?implicit-login=true%26297
Main Finding:
Patients’ experiences of NTM pulmonary disease highlight important and unmet needs for better pharmacological treatment and education of medical staff.
To read the full article, visit: https://publications.ersnet.org/content/erjor/7/1/00807-2020
Interested in joining the Bronchiectasis PAG?
General Resources on Bronchiectasis
If you are visiting this website for more information about bronchiectasis, living with bronchiectasis, or how to improve self-management of the condition, we encourage you to visit:
http://www.europeanlung.org/lung-disease-and-information/lung-diseases/bronchiectasis for the most up to date patient information.
https://www.europeanlunginfo.org/bronchiectasis for patient-friendly, accessible information, including videos – much of which has been translated into multiple languages including French and Dutch.
https://europeanlung.org/en/information-hub/guidelines/managing-bronchiectasis-in-adults/ for the ‘Managing adult bronchiectasis – understanding the professional guidelines’ document – a patient-friendly, version of the European Respiratory Society’s Bronchiectasis Treatment Guidelines (2017) created by the ELF and the Bronchiectasis PAG which has now been translated into multiple languages.
