Patient Organisation Round-up: October 2025

To mark World Lung Day on 25 September, the Asthma Society of Ireland hosted a special presentation for members of the Oireachtas (National Parliament of Ireland) to highlight the challenges faced by the 450,000 people living with asthma in Ireland. The Society outlined practical, evidence-based solutions that could be advanced through Budget 2026, focusing particularly on the affordability of asthma medication and access to MART (maintenance and reliever therapy) combination inhalers.

The Society recommends that ICS/formoterol MART inhalers be provided free of charge to asthma patients on a phased basis over a 3-year period, starting with 12–17-year-olds in year one. It also calls for the establishment of a National Review of Asthma Deaths, to identify preventable factors and improve care. Through these measures, the Asthma Society aims to improve outcomes, reduce unnecessary hospitalisations and ultimately save lives.

The PinkTree Foundation recently organised a lung health screening and awareness camp in Govandi BMC Ward, in collaboration with Waatavaran Foundation and the Govandi New Sangam Welfare Society (GNSW). The initiative addressed the rising burden of respiratory illnesses linked to exposure to air pollution. More than 150 residents, ASHA workers and caregivers received free lung screenings, health awareness sessions and educational materials.

Interactive sessions in regional languages helped participants recognise early symptoms of asthma, COPD and other lung conditions. The PinkTree team also promoted preventive behaviours like mask usage, indoor air hygiene and pollution awareness to foster healthier practices. This community-led collaboration showcased how local partnerships can bridge healthcare access gaps and advance lung health across India.

The PHURDA team continues to promote lung health in Ukraine, despite the ongoing conflict, through its Healthy Lungs for Life project. In September, the initiative brought together schools, teachers and young people to raise awareness about lung health through interactive lectures, educational discussions and a creative flash mob.

Participants proudly shared photos and short videos using the hashtags #BreathOfFreedom and #HealthyLungsForLife, spreading a positive message across social media about the right to breathe clean air. The campaign reached hundreds of students and educators, inspiring communities to make healthier choices and start conversations about respiratory wellbeing. PHURDA also developed billboards and city light displays to attract wider public attention to lung health.

The Spanish COPD patient association, APEPOC, visited the Son Espases University Hospital in Palma de Mallorca, Spain, to learn more about ongoing COPD clinical trials. The visit was organised in collaboration with the Head of Pulmonology and the coordinator of the Clinical Trials Unit at the Biomedical Research Centre for Respiratory Diseases.

During the visit, the delegation explored the Balearic Clinical Research and Clinical Trials Unit (UBICEC), which conducts phase I and phase II clinical trials. These complex studies strengthen clinical research capacity in Spain and help ensure the safety and efficacy of new respiratory therapies without requiring patients to travel abroad. The delegation also received detailed information about related pulmonology services, including conventional hospitalisation with specialised support and the Intermediate Respiratory Monitoring Unit.

The Serbian national association, Alergija i ja, successfully completed its Check Your Lung Function campaign, providing free spirometry examinations across Serbia to raise awareness about the importance of lung health. The campaign targeted regions with limited access to respiratory specialists, helping with early detection of chronic respiratory diseases such as COPD and asthma, while also highlighting the impact of smoking and air pollution.

Over the course of the campaign, the team visited seven cities, participated in two press conferences, and conducted three group psychological workshops for patients with asthma and COPD at the Clinic for Pulmonology in Belgrade. These workshops focused on helping patients cope with emotional stress, adapt to lifestyle changes and improve adherence to therapy. In total, 135 free spirometry tests were carried out, with more than 20 patients referred for further diagnostics. The campaign achieved significant media attention, with over 100 mentions and multiple appearances in national and local outlets.

The Organisation for Respiratory Health in Finland, Hengitysliitto, met with Minister of Sports, Physical Activity and Youth Mika Poutala to discuss the growing need for adapted physical activity. The organisation is promoting its new handbook encouraging safe exercise for people with lung conditions and highlighting the benefits of regular activity. Social and health organisations have the expertise to meet this need and to provide the support needed. “Movement belongs to everyone — let’s ensure together the conditions and environment that make it possible,” the organisation said, emphasising the need for collaboration between social and health bodies to support physical activity for all.

The BronQ Family Study, led by the Global Foundation for the Care of Newborn Infants (GFCNI), explores the long-term challenges faced by families after preterm birth, particularly when children are affected by Bronchopulmonary Dysplasia (BPD).

Parents and primary caregivers of children born preterm and currently under 18 are invited to complete an anonymous online survey. The study aims to improve understanding of how BPD affects family life and wellbeing, and to help shape better support and care in the future. The questionnaire is available in the local languages of the participating countries: France, Germany, Italy, the Netherlands, Spain, the United Kingdom (incl. Northern Ireland) and the United States.

On 21 September, MNT Mon Poumon Mon Air took part in the Urban Trail of Fondation du Souffle in Paris for the third consecutive year. The trail is located in Montmartre and is 7 kilometres. The aim was to raise funds for the Fondation du Souffle, France’s leading foundation supporting research on respiratory diseases. Together we are stronger.

EUFOREA has launched a new survey to better understand patient experiences living with airway diseases and what matters most to them during treatment. The findings will help advocate for more patient-centred care in daily practice and guide how patient priorities are represented in research and policy discussions.

ALK Positive UK has appointed Lynsey Conway as its new Chief Executive. She brings extensive experience in lung cancer advocacy and communications and plans to focus on expanding patient support, raising awareness of ALK-positive lung cancer and strengthening advocacy for patients in research and policy. Since 2005, Lynsey has also served as External Affairs Lead for the UK Lung Cancer Coalition (UKLCC) and will continue in this role alongside her new position.

On 23 October 2025, SarcoidosisUK will host a Sarcoidosis Patient Day — featuring a variety of speakers covering topics related to pulmonary sarcoidosis and including a full hour dedicated to answering questions from attendees. It will run from 9.30–13.30 BST (10.30–14.30 CEST). The online event is free to attend and open to all. The Zoom link will be sent via email closer to the event date. SarcoidosisUK looks forward to welcoming participants from across the UK and beyond.

The Pneumolight campaign, together with the Guatemalan Association of Infectious Diseases (AGEI) and the Guatemalan Association of Pulmonology and Thoracic Surgery (AGNCT), announces the 5th Global Conference for World Pneumonia Day. The hybrid event will take place on 12 November 2025 in Guatemala City.

This year’s theme, “Enhancing Diagnosis, Managing Oxygen Needs, and Tackling Antibiotic Resistance,” highlights the urgent need for innovation and collaboration in the fight against pneumonia, the world’s leading infectious killer. The conference will bring together specialists from across the globe to discuss the latest advancements in pneumonia diagnosis, equitable access to oxygen therapy, and effective strategies to combat antimicrobial resistance. By uniting health professionals, researchers and policymakers, the 5th Global Conference reaffirms a shared commitment to save lives and accelerate progress against pneumonia worldwide.