Key updates from the IRC summer quarterly meeting

24 June 2026

The International Respiratory Coalition (IRC) held its summer quarterly meeting on 23 June, bringing together national coalition partners from across the network for updates, discussion and planning.

WHO/IRC workbook pilot for chronic respiratory diseases

A significant update shared at the meeting was the launch of a new collaboration between the IRC and World Health Organization (WHO), presented at the IRC Annual Workshop in May 2026 by Dr Elena Tsoy, WHO Technical Officer. The initiative centres on a WHO workbook pilot focused on chronic respiratory diseases, designed to support national coalitions in undertaking structured self-assessments and developing concrete follow-up actions.

Eleven coalitions have expressed interest in taking part; a workshop is being planned for later in 2026, bringing together clinicians and patients from participating national coalitions alongside key national stakeholders.

Read more about IRC and WHO’s recent collaborations.

Engaging patients in national coalitions

The meeting was joined by Jean-Michel Fourrier, who lives with the rare lung condition, idiopathic pulmonary fibrosis (IPF), and who is a patient advocate within the French national respiratory coalition. He described how working collectively as a national-level coalition has transformed what a small volunteer-led patient organisation can achieve, giving rare disease patients a far greater chance of being heard by decision-makers.

The discussion explored how patients can most effectively influence policy and decision-makers, what meaningful involvement looks like in practice when working alongside clinicians, policymakers and NGOs, and how coalitions can better integrate patient voices into both advocacy and strategic planning going forward.

Jean-Michel highlighted the French coalition’s co-leadership model, in which patients and healthcare professionals share governance at every level, as a key factor in making patient involvement meaningful rather than tokenistic.

The discussion also touched on the importance of including carers alongside patients in coalition work; Jean-Michel highlighted that the French coalition makes no distinction between the two, with carers able to participate fully and contribute to working groups on an equal basis.

Jean-Michel urged coalitions to move beyond consultation and invest in building patient leadership, so that advocates can help shape priorities from the start rather than being brought in once decisions have already been made.

Read more about the French coalition’s work and progress.

Resources for patient advocates

Director of the European Lung Foundation (ELF), Dr Pippa Powell, also joined the meeting, sharing a range of practical resources available to patient advocates working within IRC national coalitions.

Chief among these is the EPAP online training programme covering how to effectively advocate as a lung patient, how to raise awareness, how to engage with research and guidelines, and how to influence policy. The course is currently available in eight languages.

Pippa also highlighted the ELF Patient Organisation Network, which includes advisory groups and working groups at European level, giving coalition partners an opportunity to connect across borders, develop skills and share best practices.