A focus on the European Lung Health Group

Over the past years, the European Lung Health Group (ELHG) has established its role as a key platform for coordination, advocacy, and political engagement on lung health at the EU level. Bringing together patient organisations, scientific societies, and policy stakeholders, ELHG shapes a unified European agenda focused on prevention, access to care, and sustained investment in respiratory health. Even when not specific to CF, these developments remain relevant for the CF community, as they directly influence the policy environment for access to care, medicines, innovation, and patient rights across Europe.

One of the most important milestones for the ELHG has been the reinstatement of the MEP Lung Health Group in the European Parliament, ensuring a dedicated political forum for respiratory diseases. This renewed parliamentary engagement provides a concrete political channel to address issues fundamental to people with CF, including access to innovative treatments, availability of essential medicines, research funding, early diagnosis, newborn screening, and continuity of care across borders. It also raises the profile of lung diseases in broader EU health debates, including pharmaceutical policy, medical innovation, and health system resilience.

The #KeepBreathing campaign is at the heart of ELHG advocacy work, serving as a unifying platform that aligns national, European, and global actions around lung health. The campaign articulates three core policy pillars:

· Invest – advocating for stronger and sustained EU investment in respiratory research, healthcare infrastructure, innovation, and advanced therapies;
· Prevent – focusing on the prevention of lung diseases and secondary prevention of avoidable damage through better air quality, tobacco control, vaccination, and screening;
· Care – improving early diagnosis and ensuring equal access to high-quality care across all EU countries.

These priorities resonate with long-standing CF advocacy goals, particularly regarding early diagnosis through screening, innovation, equitable access to treatments, transplant pathways, and long-term multidisciplinary care.

ELHG members have also been instrumental in international advocacy ahead of the World Health Assembly 2025, contributing to the successful adoption in May 2025 of a landmark resolution: “Promoting and prioritizing an integrated lung health approach.” This marks a major political recognition of lung health as a global public-health priority. To translate this resolution into tangible action, new advocacy tools have been developed for patient organisations at national and EU levels, including an illustrated explainer video and social-media-friendly communication materials. These resources are designed to help patient groups leverage the resolution when engaging with ministries of health, national parliaments, and EU institutions.

A concrete example of how ELHG addresses practical patient barriers is its recent work on travel with medical oxygen. A new toolkit and patient checklist have been developed to support people with respiratory diseases when travelling. While initially focused on COPD, discussions highlighted that reimbursement of oxygen for travel remains a significant challenge in several EU countries, particularly in Central and Eastern Europe. This issue also affects people with other pulmonary diseases, including CF.

Another growing area of concern is misinformation in health, which directly impacts chronic and rare disease communities. Through its campaign on misinformation, ELHG urges political leaders to protect science, strengthen health communication, and invest in public health literacy. The campaign includes patient testimonials, interviews, and educational toolkits that will be translated into multiple European languages.

ELHG also plays a key role in strengthening patient leadership through the ERS Patient Advocacy Academy. The Academy provides immersive training for patient advocates from across Europe and is expanding steadily, with plans for significant growth in 2026. Beyond skills development, the Academy fosters cross-disease connections among respiratory communities, helping to build a strong, united advocacy voice at the European level.

The EU policy landscape is evolving rapidly, with several major initiatives underway that will shape the future of care and innovation. These include the revision of the EU Pharmaceutical Legislation, the upcoming EU Biotech Act, updates to the Union List of Critical Medicines, and new regulatory work on patient experience data at the European Medicines Agency. ELHG closely monitors these developments to ensure that lung health priorities are fully integrated into future legislation.

In 2026, ELHG plans to convene a High-Level Forum on Lung Health in Brussels, bringing together policymakers, patient organisations, scientists, and industry to align on the next phase of Europe’s lung-health strategy. Screening, prevention, access to medicines, and health-system preparedness will be central themes.