Patient Organisation Round-up: November 2026

The Asthma Foundation in Sierra Leone (TAF-SL) works to improve asthma awareness and support for people living with the condition across the country.

Through community outreach, public education and partnerships with healthcare professionals the organisation is improving access to reliable information, helping reduce stigma around asthma and strengthen patient voices in decisions that affect their health.

The patient organisation for lung health in Finland (Hengitysliitto) together with the Finnish Lung Health Association brought together Members of Parliament to discuss how Finland can move from a smoke-free society towards a nicotine-free future.

The discussion focused on protecting children and young people from nicotine addiction, with participants calling for stronger regulation of nicotine products, including restrictions on flavours, nicotine levels and access for young people.

NEUMOAI’s PneumoLight campaign marked World Pneumonia Day on 12 November by illuminating 320 landmarks across 44 countries in blue.

Alongside the illuminations, supporters were invited to take part in a virtual T-shirt challenge to help make pneumonia more visible and encourage greater awareness of a disease that continues to affect millions of people worldwide.

The Lung Health Foundation has launched its #SaySpirometry campaign to encourage more Canadians to ask for the test used to diagnose COPD and asthma.

The campaign follows findings that many people diagnosed with COPD have never had spirometry testing to confirm their diagnosis. By encouraging people to ask for the test, the campaign aims to improve access to lung health checks and support early diagnosis.

Association MNT Mon Poumon Mon Air has taken part in training sessions for nursing and medical students at Paris Saclay, highlighting the role patients and caregivers can play in health education.

Developed in partnership with rare disease and therapeutic education teams, the sessions gave trainee healthcare professionals the opportunity to learn directly from patients and caregivers and explore how collaboration can improve care.

The Aspergillosis Trust hosted a ‘Paintopia’ fundraising event, bringing people together for an evening of creativity while shining a light on aspergillosis.

The event encouraged conversations about the fungal lung disease that remains under-recognised and often misunderstood. Funds raised will support the Trust’s work supporting people affected by aspergillosis and improving awareness of the condition.

Alpha1 Deutschland e.V. is supporting a charity art exhibition created by artist Tabea Köhler following her diagnosis of alpha‑1 antitrypsin deficiency.

Proceeds from the exhibition will support the organisation’s work while helping raise awareness of alpha‑1. The project highlights how people living with rare conditions can use their experiences to support and inspire others.

The National Health Action Force Nepal (NHAFN) hosted a lung health awareness event in Kailali as part of its Swastha Saans Nepal programme.

Community members learned how to recognise respiratory symptoms, understand risk factors and protect their lung health. The programme continues to bring lung health education directly to underserved communities across Nepal.

Alpha‑1 Foundation Ireland launched a new psychological support leaflet during its annual patient and family conference.

Developed in collaboration with patients and families, the resource explores the emotional impact of receiving an alpha‑1 diagnosis and signposts people to free counselling and support services. The leaflet also recognises the effect a diagnosis can have on partners and family members.

Alpha‑1 Europe Alliance will host a webinar on 26 November examining how Europe can strengthen its plasma supply and safeguard access to plasma-derived treatments.

The event will bring together patient representatives, policymakers and industry experts to discuss how countries can turn policy commitments into practical action. For people who rely on augmentation therapy, a secure plasma supply remains essential.

PH Academy Ukraine brought together patients, healthcare professionals, international experts and health authorities to discuss pulmonary hypertension (PH) care despite the challenges of the ongoing war.

Discussions focused on treatment access, rehabilitation, research and transplantation, while practical workshops helped clinicians strengthen their skills. Patients also shared their experiences and highlighted the support needed to improve life with pulmonary hypertension in Ukraine.