Patient Organisation Round-up: September 2026

Youth and Children Access Rights and Empowerment (Y-CARE) will conduct a community awareness campaign on lung health in Kano State, Nigeria, at the end of September 2026.

The campaign will provide young people with practical information on lung health, risk factors and ways to protect their lungs. By reaching around 200 young people, Y-CARE hopes to improve awareness of lung health and encourage healthier lifestyle choices within underserved communities – groups of people who do not get the same access to healthcare for various reasons.

Lung Cancer Europe has launched its 12th Annual Report Survey, focusing on quality of life and support needs for people affected by lung cancer. 

The survey invites people living with lung cancer and caregivers to share their experiences of daily life, including challenges, sources of support and unmet needs. The findings will contribute to Lung Cancer Europe’s advocacy and policy work, helping ensure that patient experiences are reflected in decisions about lung cancer care across Europe. 

The Pink Tree Foundation and Dr. Reddy’s Laboratories launched a campaign to distribute 10,000 N95 masks to traffic police officers working in highly polluted areas of Delhi and Mumbai. 

The initiative aims to help protect frontline workers from the effects of air pollution and reduce the risk of lung problems linked to long-term exposure to poor air quality. By providing immediate protection, the campaign highlights the importance of lung health among people most exposed to environmental risks. 

In August, Share4Rare published a new article on Empty Nose Syndrome (ENS) in collaboration with the Spanish Association for Empty Nose Syndrome (AESNV). 

The article explains the condition, its symptoms and the challenges patients can face in obtaining diagnosis and appropriate care. By bringing ENS to a wider rare disease audience, the collaboration helps improve awareness and provides patients and families with access to reliable information. 

The Asthma Society of Ireland has urged the Government to introduce free Maintenance and Reliever Therapy (MART) inhalers for children aged 12–17 as part of its Pre-Budget Submission 2027. 

The recommendation follows research showing that asthma places a financial strain on many families, with some reporting that they have gone without prescribed medication because of cost. The proposal aims to improve access to recommended asthma treatment and reduce barriers to care for young people. 

Association MNT Mon Poumon Mon Air participated in the European Respiratory Society’s Congress  in Barcelona, joining patients, clinicians and researchers from across the lung health community. 

The association took part in patient-focused sessions and meetings, while its President co-chaired symposiums on tuberculosis vaccines and non-tuberculous mycobacterial (NTM) disease. The organisation also presented its work in the World Village, highlighting its collaboration with its Scientific Committee and strengthening connections with the international colleagues.  

The Colombian Foundation for Lung Cancer, Asthma, COPD and Other Respiratory Diseases (INSPIRAT) hosted a webinar on lung cancer featuring Dr María Fernanda Pérez. 

The session explored risk factors, warning signs and the importance of early detection, while highlighting the need for support throughout the treatment journey. By providing reliable information for patients and families, the webinar aimed to help people recognise symptoms, seek timely diagnosis and make informed decisions about their care. 

FairLife Lung Cancer Care took part in the Artificial Intelligence (AI) in Cancer Research Summer School in Corfu. Founder and President Korina Pateli-Bell joined a panel to discuss AI, access and regional inequalities.

Representing the patient perspective, she highlighted the importance of ensuring new technologies improve access to earlier diagnosis, biomarker testing, treatment options and clinical trials. The discussion emphasised that innovation should help reduce inequalities and improve access to care for all patients, regardless of where they live.

PHURDA took part in the ERS Congress 2026, where a representative highlighted the challenges facing people living with lung diseases in Ukraine.

During a panel discussion, PHURDA raised concerns about unequal access to medicines, delayed diagnosis and shortages of rehabilitation services and specialist care. These challenges have been intensified by the ongoing war.

The organisation also emphasised the importance of involving patients in healthcare decision-making and highlighted its work through the Ukrainian Respiratory Coalition to help improve respiratory care in Ukraine.