Patient Organisation Round-up: October 2026

The Portuguese severe asthma organisation, Associação de Asma Grave (AAG), held its first national meeting, Arejar (“Breathe Easy”), on 17 October 2026.

Uniting patients, carers and healthcare professionals, the event created a space to share experiences, discuss challenges and strengthen connections within the severe asthma community.

Gotua Medical Center, the Asthma and Allergy Patients Association of Georgia (AAPAG) and the Georgian Academy of Allergy, Asthma and Clinical Immunology organised the country’s first Lung Disease Screening Week.

Around 60 people at risk of lung disease received free lung health checks (spirometry tests), while healthcare professionals met to discuss earlier diagnosis and disease management. The initiative highlighted the importance of prevention, early detection and lung health awareness.

The Alpha‑1 Europe Alliance has published a position paper calling for a more resilient and self-sufficient plasma supply across Europe.

For people living with alpha‑1 antitrypsin deficiency (AATD) who rely on augmentation therapy, access to plasma-derived treatments depends on a stable supply. The paper urges policymakers to strengthen collection systems and reduce reliance on imports to help protect long-term access to treatment.

Alpha‑1 Switzerland, a patient organisation for people affected by alpha‑1 antitrypsin deficiency (AATD), celebrated its 10th anniversary by hosting an event for members, healthcare professionals, volunteers and supporters.

The event recognised a decade of work raising awareness, building community and supporting people living with the condition.

The Aspergillosis Trust has launched a new film to raise awareness of living with aspergillosis, a condition that is often misunderstood and difficult to diagnose.

Featuring patients, families and healthcare professionals, the film highlights the physical and emotional impact of living with aspergillosis, while encouraging greater awareness and earlier recognition of fungal lung disease.

L’Associazione Nazionale Alfa1-AT ODV, the Italian patient organisation for people affected by alpha‑1 antitrypsin deficiency (AATD), will mark its 25th anniversary with a national conference in Bologna from 27–28 November 2026.

The event will reflect on progress in diagnosis, awareness and care for people living with AATD, while bringing patients, families and experts together to discuss the challenges that remain and the priorities for the years ahead.

Associazione Apnoici Italiani (AAI), the Italian patient organisation for people affected by sleep apnoea, hosted its 5th SASD National Congress in Milan, coinciding with the organisation’s 10th anniversary.

The event combined expert-led discussions with screening activities and public awareness initiatives, reinforcing the message that earlier recognition of sleep apnoea can lead to faster diagnosis, treatment and improved quality of life.

Lung health organisations joined forces at Leinster House, home of Ireland’s national parliament, to mark World Lung Day and call for action on the issues affecting people living with lung conditions. Organised by the Asthma Society of Ireland, the event brought organisations together to meet directly with politicians and discuss priorities for lung health.

The groups highlighted delays in diagnosis, gaps in specialist care and the need for greater investment in respiratory services and research. They also called for action on wider risks to lung health, including air pollution, climate change and smoking, ahead of Budget 2027.

The Belgian Lung Foundation and the Belgian Respiratory Society brought together more than 20 lung health partners to discuss the development of a national plan for long-term lung diseases in Belgium.

Patient organisations, healthcare professionals and policymakers met to help shape priorities for prevention, early diagnosis, treatment and long-term care. The initiative aims to build a coordinated approach to improving care for people living with long-term lung diseases across Belgium.

The Spanish Association for Empty Nose Syndrome (AESNV) is developing a resource that brings together decades of research and clinical evidence on empty nose syndrome (ENS).

The resource aims to increase awareness among healthcare professionals and support earlier recognition of a condition that many patients struggle to have diagnosed and understood.

L’Associazione Nazionale Alfa1-AT ODV, the Italian patient organisation for people affected by alpha‑1 antitrypsin deficiency (AATD), will mark its 25th anniversary with a national conference in Bologna from 27–28 November 2026.

The event will reflect on progress in diagnosis, awareness and care for people living with AATD, while bringing patients, families and experts together to discuss the challenges that remain and the priorities for the years ahead.

To mark World Lung Day, INSPIRAT, the Colombian Foundation for Lung Cancer, Asthma, COPD and Other Respiratory Diseases, hosted a webinar focused on prevention, education and awareness of lung conditions.

The session explored topics including lung cancer, COPD, vaping and respiratory syncytial virus (RSV), highlighting risk factors and the importance of early detection. By sharing reliable information on lung health, the webinar encouraged people to recognise symptoms early and take steps to protect their health.

Lung Cancer Europe has launched its Get Checked! 2026 campaign ahead of Lung Cancer Awareness Month (November), focusing on lung cancer and primary care.

The campaign combines patient experiences, healthcare professional perspectives and evidence-based information to raise awareness of symptom recognition, diagnosis and access to care. Available in 15 languages, it includes free resources that organisations can use and adapt to support awareness activities across Europe.

MNT Mon Poumon Mon Air, a French patient organisation for people affected by non-tuberculous mycobacterial (NTM) lung disease, took part in the Fondation du Souffle Urban Trail fundraising walk in Paris to raise awareness of NTM and support lung health research.

SarcoidosisUK has awarded its 2026 Research Innovation Award to Professor Jennifer Quint and her team at Imperial College London.

Their project will combine patient experiences with real-world healthcare data to identify where delays in diagnosis and treatment occur, helping build a clearer picture of how sarcoidosis care can better reflect the realities patients face.

The Serbian Allergy and Airways Diseases Patients Association (Alergija i ja, meaning “Allergy and Me”) marked World Lung Day at the Belgrade Health Festival in partnership with Serbia’s National Non-Smoking Initiative.

Visitors were offered free lung health checks (spirometry testing) alongside information on lung health and the importance of early diagnosis, helping raise awareness of lung health.

APELA, the Portuguese association for people living with amyotrophic lateral sclerosis (ALS), has welcomed a recommendation from Portugal’s Parliament calling for 17 urgent measures to improve support for people living with ALS and their families.

The recommendations include faster access to essential equipment, stronger multidisciplinary support and improved access to home respiratory care. Many of the proposals reflect priorities long championed by APELA to improve care, quality of life and dignity for people affected by ALS.