ELF/EMBARC Bronchiectasis Patient Conference: recordings now available

Our second Bronchiectasis Patient Conference took place on 27 March 2022. We want to thank our hosts, speakers, session chairs, attendees and members of our Bronchiectasis Patient Advisory Group (PAG). Without them, the day would not have been such a great success.

About the conference

The conference focused on self-management. Our PAG members created videos which showed their experiences. These included:

• airway clearance;
• home intravenous antibiotics (IVs);
• how diet can help manage symptoms;
• psychological and social challenges of living with bronchiectasis, and
• what it is like to take part in a clinical trial.

Healthcare experts gave patient-focused talks. These included:

• an overview of treatments for bronchiectasis;
• the role of viral infections;
• airway clearance management;
• practical aspects of nutrition;
• mental health impacts;
• pseudomonas;
• managing exacerbations, and
• emerging treatments for bronchiectasis.

Statistics

Over 500 individuals joined us live on the day from 67 countries. They were:

• people with bronchiectasis and their family members (57%),
• healthcare professionals and medical students (35%), and
• patient organisation representatives, people with other lung conditions and the general public (8%).

Recordings of the talks and all the patient videos are now available to watch on the ELF event page.

245 questions were asked on the day. We are compiling all the questions with their answers. We are also asking speakers to answer any questions that were not answered on the day. We will add these to the ELF event page as an additional useful source of information.

We also trialled an automated translation app. Over 200 attendees accessed the app. The feedback has been mixed, with some rating it ‘excellent’ and others ‘very poor’. We will review in more detail to see whether it is worthwhile using for future events.

Feedback

A selection of feedback and comments from attendees are listed below:

“Nice balance between medical experts and patients. Very impressive to me to learn from patients how their day with bronchiectasis looks like.”

“It gave me new hope as a bronchiectasis patient.”

“The four presentations that I have seen have enchanted me… I am not a patient of bronchiectasis, I am a doctor and I wanted to understand the subject a little better.”

Donations

We would like to thank everyone who made a donation. We raised 460 euros to go towards future events. You can still donate here.