Patient Advisory Group Round-up: May 2025

World Asthma Day

World Asthma Day on 6 May gave the ELF Asthma PAG an opportunity to highlight their priorities on social media. They used the awareness day to support the Global Initiative for Asthma’s theme to make inhaled treatments accessible for all. As part of the campaign, members of the PAG, Dominique and Hilary, shared why equal access to inhalers is important for managing the condition and what more must be done in the future. Follow ELF on social media to learn more and stay up to date on future campaigns.

In support of this year’s World Asthma Day theme, Rikki, Dominique and Olivia took part in a roundtable discussion on smart inhalers, as a part of the CONNECT Clinical Research Collaboration (CRC). They shared their experiences of using digital tools to manage their health and how smart technology has helped them track symptoms and communicate with their healthcare team. They also talked about the challenges such as managing multiple smart devices when living with other health conditions, concerns about data privacy and how easy tools are to use. By sharing their experiences, the group hopes these technologies can be improved and lead to better outcomes for people living with asthma around the world.

SHARP clinical research collaboration

Members of the Asthma PAG continue to play an active role in the SHARP clinical research collaboration (CRC), which works to ensure everyone living with severe asthma in Europe can access the specialised care they need. Hilary, the project’s patient chair, recently met with the national leads to discuss the value of patient involvement in research and to help keep patient priorities at the heart of SHARP’s work. 

The PAG is also working closely with SHARP on this year’s Severe Asthma Patient Conference. The event will feature patients alongside healthcare professionals to explore treatment options and discuss what meaningful care looks like. Sign up to the ELF newsletter to be the first to hear when registration opens. 

New project on work-related asthma

Donna has taken on a new role as a patient representative in the European Respiratory Society (ERS) task force developing an official statement on work-related asthma. This group brings people with lived experience together with experts to help shape recommendations and improve care for the condition. Donna is committed to use her own experiences to make sure the patient voice is considered when developing the guidelines.

New members

The Asthma PAG welcomes two new members, Pamela and Sue. Sue recently shared her experiences of living with asthma on the ELF website, including advice for people who are newly diagnosed and her hopes for the future.

Sharing information on symptoms and treatment

The Aspergillosis PAG remains committed to raising awareness of aspergillosis among patients and healthcare professionals. Working with professionals from the European Respiratory Society (ERS), the PAG has helped develop a new page for the ELF website, which provides information on symptoms and treatments. It will be available in 9 languages on the ELF Information Hub in June.

The PAG is also planning a webinar later this year to give patients an opportunity to learn more about the condition and ask questions to PAG members and professionals.

New members

The Aspergillosis PAG welcomes 5 new members: Martin, Pierre, Pamela, Marcela and Tom.

Since joining the PAG, Pierre has become the patient representative on the European Respiratory Society (ERS) task force ‘Evidence based minimum standard guideline for chronic pulmonary aspergillosis and guidance for excellent care.’ The task force will put together clinical practice guidelines for the care of patients with chronic pulmonary aspergillosis.

Celebrating 5 years of the ELF Bronchiectasis Patient Conference

The Bronchiectasis PAG held its 5th annual Bronchiectasis Patient Conference, co-developed with EMBARC, on 15 March. The event offered patients and experts an opportunity to come together and discuss self-management techniques, cross-infection risks and the latest research. Over 500 people attended the event and were able to ask questions to the experts.

Watch the recording.

Planning ahead for World Bronchiectasis Day

World Bronchiectasis Day takes place annually on 1 July and this year’s theme is ‘empowerment’.  Members of the Bronchiectasis PAG are planning a webinar to mark the occasion.

The PAG is also working on new resources with the aim of helping patients better manage their condition.  Sign up to the ELF newsletter to learn more about when this information is available and when registration opens for upcoming events.