Patient Organisation Round-up: May 2026

The Alpha‑1 Europe Alliance hosted an event at the European Parliament bringing together patients, clinicians and policymakers to address inequalities in Alpha‑1 antitrypsin deficiency (AATD) care across Europe. Discussions focused on persistent gaps in diagnosis, treatment access and plasma supply, with many people still undiagnosed despite AATD being one of the most common inherited respiratory conditions. Alliance President, Fernanda Aspilche Ferro, presented a call to action outlining six priorities to improve diagnosis rates and strengthen coordinated European action on AATD.

The French Federation of Respiratory Patients’ Associations (FFAAIR) marked World Asthma Day 2026 by hosting a virtual “Asthma Café” for people living with asthma and their families. The online meeting focused on everyday topics including asthma at work and during holidays, giving participants an opportunity to share experiences and practical challenges in an informal setting. The discussions highlighted ongoing gaps in awareness and understanding of severe asthma among both healthcare professionals and the public, reinforcing the important role of patient organisations in advocacy and support.

To mark World Asthma Day, the Spanish COPD Association (APEPOC) hosted a webinar exploring the similarities and differences between asthma and chronic obstructive pulmonary disease (COPD). The session explained differences in causes, progression and reversibility, while highlighting shared features such as long-term swelling in the airways and other breathing symptoms. The webinar aimed to improve understanding of both conditions, supporting earlier diagnosis and better management.

The Global Foundation for the Care of Newborn Infants (GFCNI) is contributing to a pre‑congress webinar ahead of the European Respiratory Society (ERS) Congress on partnerships in respiratory care. The session will explore how collaboration between patients, families, clinicians and researchers can improve care for children and young people. It will also share insights from the BronQ Family Study on bronchopulmonary dysplasia.

The webinar will take place on 30 July and registration is now open.

PHURDA marked World Asthma Day and World Pulmonary Hypertension Day in Ukraine with an online patient meeting and national awareness campaigns. The meeting provided a platform to discuss challenges in asthma and pulmonary hypertension care, including access to treatment during wartime and the use of digital consultations. In collaboration with the Ukrainian Respiratory Coalition, PHURDA are supporting public awareness campaigns and shared information through local communities. These efforts helped raise awareness of symptoms and the importance of early diagnosis and ongoing care.

The National Aspergillosis Centre is supporting a UK research project exploring the impact of damp homes, mould and indoor air quality on lung health. The project responds to concerns raised by people living with aspergillosis, asthma and other long-term lung conditions about damp housing and mould. Participants are invited to share their experiences, including those without a diagnosed condition. Researchers will use these insights to identify gaps in advice and improve understanding of environmental factors linked to respiratory disease.

Pink Tree Foundation organised a lung health awareness and screening initiative at the Narsee Monjee Institute of Management Studies (NMIMS) campus in Mumbai, in partnership with the NMIMS School of Mathematics, Applied Statistics and Analytics. The programme combined education on lung health with AI-based voice analysis for early identification of respiratory risk. 75 people took part, including students, staff and faculty. Findings highlighted low previous screening rates and a high level of reported respiratory symptoms, reinforcing the need for earlier detection and awareness. 

Association MNT Mon Poumon Mon Air took part in the Schneider Electric Marathon de Paris on 12 April 2026, helping to increase visibility of a rare lung disease at an international event. Clémentine, the daughter of one of its members, completed the marathon in support of people living with non‑tuberculous mycobacterial (NTM) lung disease. Her participation helped raise awareness and highlighted the importance of community engagement in supporting people affected by rare respiratory diseases.

The Canadian Pulmonary Fibrosis Foundation (CPFF) highlighted inequalities in access to oxygen therapy across Canada. Findings from its national surveys of patients, caregivers and healthcare professionals show that access to oxygen and reimbursement varies depending on where people live, creating unequal access to care for people who rely on it. CPFF is using this evidence to advocate for fairer, more consistent access to oxygen therapy in collaboration with healthcare partners and policymakers. 

SarcoidosisUK has awarded its Research Innovation Award to Dr Claire Rice and her team at the University of Bristol for research into less invasive ways to diagnose neurosarcoidosis. The 18-month study will explore whether cell-free DNA in tears could be used as a biomarker for sarcoidosis affecting the eye and nervous system. The project is funded with £59,992.66 through the award. This research aims to reduce the need for invasive procedures and improve the patient experience.

Respiriamo Insieme APS has announced the return of its “Let’s Breathe the Mountain Together” health camp, taking place from 12 to 25 July 2026. The camp supports children and young people living with lung conditions through health screening, therapeutic activities and outdoor exercise in a safe and supportive environment. The programme also encourages social connection and shared experiences among participants and families. The initiative is in collaboration with healthcare and scientific partners, highlighting the value of cooperation between patient organisations, healthcare professionals and researchers in supporting lung health and wellbeing.

Alfa‑1 España marked European Alpha‑1 Day on 25 April with awareness activities focused on Alpha‑1 antitrypsin deficiency (AATD) in hospitals across Spain. The organisation set up information booths in 12 hospitals to provide accessible information for patients and visitors. In four hospitals, people were also able to take part in genetic testing using rapid test kits. The activities aimed to raise awareness of AATD and highlight the importance of earlier diagnosis.

The Colombian Foundation for Lung Cancer, Asthma, COPD and Other Respiratory Diseases (INSPIRAT) marked World Asthma Day with a webinar held on 5 May. Healthcare specialists discussed the importance of timely diagnosis, appropriate treatment and comprehensive care for people living with asthma. The event also highlighted the role of patient education in supporting quality of life and daily disease management. During the webinar, INSPIRAT also introduced the “Entusiasmados por vivir” awareness campaign which encourages prevention, self‑care and realistic approaches to maintaining an active daily life.

Alfa‑1 Norden is organising a series of events across Sweden, Denmark and Norway between May and June 2026. The events are for people living with Alpha-1 antitrypsin deficientcy (AATD) and their families and are focused on strengthening knowledge and support in the community. The programme begins with the Nordic Alfa‑1 Family Weekend in Gothenburg, Sweden, from 22 to 24 May. Followed by member weekends in Denmark and Norway. Activities will include expert talks, peer support and opportunities to share lived experience. These events aims to strengthen community connections across the Nordic region and improve knowledge and support for people affected by AATD.

Alpha1 Deutschland e.V. is celebrating 25 years of supporting people living with Alpha-1 antitrypsin deficiency (AATD) and their families. It also works with national and international respiratory networks to strengthen awareness and improve care. Founded in 2001, the organisation has become one of the largest Alpha‑1 patient associations in Europe, providing information, advocacy and support for people affected by the condition. As a part of its anniversary, around 200 people attended the organisation’s annual members’ meeting and Information Day in Bad Wildungen. The event included expert talks, medical updates and opportunities for patients and families to share experiences and practical advice.