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.

All of the resources created by EMBARC/ELF for those with bronchiectasis can be found here, or by visiting the ELF website.

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?

Are you a patient with bronchiectasis looking to share your voice, advocate for others living with bronchiectasis, and contribute to meaningful research projects aiming to improve the treatment, awareness and understanding of bronchiectasis?
 
If so, please consider joining the ELF Bronchiectasis PAG!
 
To find out more about joining the ELF Bronchiectasis PAG, visit https://europeanlung.org/en/people-and-partners/patient-advisory-groups/ and read about the aims, membership and practical arrangements of the ELF PAGs in the PAG Terms of Reference. 
 
Please note that involvement in the PAG is voluntary and ELF and/or EMBARC are unable to pay you for your time.

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.