Patient Organisation Round-up: June 2026

National Health Action Force Nepal (NHAFN) has delivered its first lung health project, Swastha Saans, bringing lung screening and education directly to communities in Nepal with limited access to care.

Using simple breathing tests at local outreach sites, the project helped people living with asthma and COPD to recognise their symptoms and understand when to seek medical help.

Asthma Ghana, in partnership with the Ghana Education Service, held a World Asthma Day event in Accra with 600 students from six local high schools, improving understanding of how to manage asthma in daily life.

Through live demonstrations and Q&As, students had the chance to use inhalers, while open discussions challenged common myths around asthma.

The Italian Association of Bronchiectasis APS held its second National Congress in Milan, bringing together people living with bronchiectasis and healthcare professionals to discuss how to improve treatment and care.

At the heart of the event was the Patient Village, which provided a unique space for questions, personal stories and patient involvement in shaping healthcare pathways.

The Organisation for Respiratory Health in Finland (Hengitysliitto) played an active role in creating a national Respiratory Health Network, holding its first meeting in the Finnish Parliament on 26 May 2026.

Hengitysliitto brought patient and clinical insights into discussions, aiming to promote respiratory health, raise awareness of respiratory conditions and influence clinical practices.

The Netherlands Sleep Apnea Association (ApneuVereniging) held a peer support event with professors from the University of Antwerp to discuss new ways to evaluate sleep apnoea and personalise treatment.

People living with sleep apnoea had the chance to connect with one another and share experiences with specialists.

The Spanish Association for Empty Nose Syndrome (AESNV) worked with Spain’s Rare Disease Patient Registry (RePER) to improve the recognition and recording of Empty Nose Syndrome (ENS).

Under the new professional guidelines, ENS has its own clearer coding within the registry, separate from general nose conditions, to help people living with ENS access better care.

Association MNT Mon Poumon Mon Air took part in a respiratory research meeting at Nantes University, bringing patients into discussions with researchers and clinicians about how research and technology can support people living with respiratory diseases.

The meeting aimed to showcase the latest research on specific diseases and discuss cross-cutting issues, including how the environment and diet affect lung conditions.

SİLYADER, the primary ciliary dyskinesia (PCD) association of Türkiye — established by a mother of a young person living with PCD — published a series of interviews with people living with PCD in Turkish national newspapers.

The interviews aimed to raise awareness about the condition and strengthen connections between patients, families and healthcare professionals.

The Aspergillosis Trust took part in the Fungal One Health and Antimicrobial Resistance (AMR) Network meeting, sharing patient experiences in discussions that linked human, animal and environmental health with antimicrobial resistance.

An upcoming documentary film involving the Trust’s Chair is set to highlight the impact of fungal disease and antifungal resistance on the lives of people living with aspergillosis and their families.

The Asthma Society of Ireland shared new survey results for World Asthma Day, highlighting how asthma continues to affect children and families through hospital visits, disrupted sleep, missed school and difficulties accessing medication.

The campaign identifying gaps in access to treatment and support, aiming to improve access to care and asthma management for children across Ireland.

The INSPIRAT Foundation marked World Asthma Day with an educational event that brought together people living with asthma, caregivers and healthcare specialists to share practical guidance on asthma care.

The discussions highlighted the importance of recognising symptoms early, maintaining regular medical follow-up and ensuring adherence to prescribed treatments.

The Association for Support and Information for Families and Patients with Pneumonia (NEUMOAI) confirmed that 156 landmarks in 106 cities across 30 countries will take part in PneumoLight 2026, lighting up blue for World Pneumonia Day on 12 November this year.

These public displays aim to raise awareness, promote prevention and spur global action while helping more people recognise the impact of respiratory infections.

The Severe Asthma Association (AAG) in Portugal co‑organised a World Asthma Day event in Lisbon, bringing together people living with asthma and healthcare professionals to discuss how to improve asthma control.

Topics included access to inhaler treatment and the benefits of regular use in preventing asthma attacks.

APEPOC, the Spanish association of patients with chronic obstructive pulmonary disease (COPD) took part in Madrid’s multidisciplinary conference on the condition, sharing the experiences and priorities of people living with COPD with healthcare professionals.

The meeting formed part of ongoing training for primary care professionals, helping to ensure that everyday challenges are considered when discussing COPD care.

Respiriamo Insieme APS published a new book based on its Writings in Pink project, sharing personal stories from women about daily life living with respiratory conditions, including chronic obstructive pulmonary disease (COPD). 

The book aims to improve understanding of living with breathing difficulties, raise funds for Respiriamo Insieme APS’s prevention projects and increase support for patients. 

Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) marked World Pulmonary Hypertension Day by co‑hosting a traditional bocce event in Ankara, representing patient perspectives on how pulmonary hypertension and scleroderma affects daily life.

The event encouraged physical activity, peer support and social connection for people living with the conditions.

The 37th Federation of Respiratory Patients (FFAAIR) Congress took place between 4–5 June in Strasbourg, bringing together respiratory patient associations from across France to discuss patient needs, including access to care and daily challenges.

These exchanges aimed to improve the Federation member associations’ understandings of common challenges faced by people living with respiratory conditions in France.

Padua Lung Transplant Patients Association (UTPP) held its second charity beach volleyball tournament in Faenza, combining sport with clear messaging about organ donation and transplant support.

The event aimed to encourage more people to consider organ donation and to support transplant patients.

LAM Academy Sweden brought together people living with lymphangioleiomyomatosis (LAM) for a Walk and Talk in Stockholm, where people living with the condition had the chance to connect in a flowered garden and greenhouse.

The event gave people, especially those newly diagnosed, a chance to ask questions and hear from others living with the condition.

PHURDA took part in the 7th International AAA Congress on Respiratory and Atopic Diseases and the EEA Meeting 2026 in Sarajevo, where patients, clinicians and researchers discussed new approaches to prevention, diagnosis and respiratory care. 

At the event, PHURDA exchanged ideas with organisations across Europe, learning about new approaches to patient support, advocacy and healthcare communication.