Patient Organisation Round-up: August 2026

Bronchiektasen e.V., Germany’s national bronchiectasis patient organisation, has launched two new online resources to support people affected by bronchiectasis. 

A new mental health resource provides guidance on anxiety, low mood, fatigue and wellbeing, while signposting people living with bronchiectasis and their families to appropriate support.  A second resource for parents and caregivers offers practical, age-specific information for families of children and young people living with bronchiectasis, covering family life, school, independence and transition to adult care. 

The Asthma Society of Ireland and the Midlands Regional Hospital Portlaoise hosted their second annual Asthma Camp in July, helping 40 children with asthma build confidence in managing their symptoms through fun, interactive activities, alongside education sessions for parents.  

The programme aims to improve children’s confidence, reduce flare-ups, school absences and emergency hospital visits, and give parents greater reassurance. Following the success of its second year, the Asthma Society hopes to expand the initiative in 2027 and beyond. 

The Italian patient organisation for children with congenital lung malformations, Bambini con la CCAM, has launched a new website featuring stories from families affected by congenital pulmonary airway malformation (CPAM). 

The stories aim to provide support, reassurance and hope for parents navigating a diagnosis, while helping families connect with others facing similar experiences. 

A team of researchers from the Royal College of Surgeons in Ireland (RCSI), based at Beaumont Hospital in Dublin, took part in the “HELL & BACK” challenge in June 2026 to raise funds for Alpha‑1 Foundation Ireland. 

The team completed the 8km obstacle course to raise awareness of Alpha‑1 antitrypsin deficiency and support the foundation’s work for people affected by the condition. Their efforts raised more than €1,000 for the organisation. 

The Spanish Association for Empty Nose Syndrome (AESNV) took part in a Spanish-language podcast episode on Empty Nose Syndrome (ENS), hosted by “Give yourself a break“, a podcast produced by FENAER (the Spanish Federation of Associations of Patients with Allergies and Respiratory Diseases). 

The episode titled “Empty Nose Syndrome: I breathe, but I do not breathe” brought together patients, healthcare professionals and AESNV representatives to discuss the impact of ENS and share lived experiences, helping to raise awareness and improve understanding of this under-recognised condition. 

MNT Mon Poumon Mon Air, a French patient organisation for people living with non-tuberculous mycobacterial (NTM), marked World NTM Awareness Day on 4 August by promoting awareness campaigns and encouraging people to share information about the condition. 

The annual campaign aims to raise awareness of NTM, improve understanding of this rare condition and help people access reliable information and support to manage their health with more confidence. 

The Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA) together with the Sister Dalila Charity Foundation and the Ukrainian Respiratory Coalition, held a practical spirometry workshop for healthcare professionals in Lviv on 21 June. 

The workshop provided hands-on training in how to perform and interpret spirometry tests, helping healthcare professionals strengthen their skills in using this important test to identify lung conditions at an early stage. 

PHURDA supports people living with pulmonary hypertension in Ukraine through advocacy, awareness and patient support. In June, representatives took part in the Global Pulmonary Hypertension Patient Hackathon, held alongside the Pulmonary Hypertension Association’s annual conference (PHA 2026) in Dallas.

The hackathon brought together patients, advocates and healthcare experts to develop practical solutions to priorities identified by people living with pulmonary hypertension, including earlier diagnosis. PHURDA shared the experiences of patients in Ukraine and highlighted the importance of maintaining access to treatment despite the ongoing challenges of war.

The Italian patient organisation Respiriamo Insieme (Let’s Breathe Together) has launched a survey to better understand the experiences of children living with chronic respiratory diseases who have recurrent respiratory infections. 

The survey will explore symptoms, quality of life, daily challenges and unmet needs. It aims to help ensure that future research and care better reflect the experiences of children and families affected by chronic respiratory conditions. 

Hengitysliitto, Finland’s national respiratory health organisation, took part in SuomiAreena 2026, Finland’s largest public discussion festival, where it co-hosted a panel discussion with the Finnish Non-Communicable Diseases Network on digital healthcare services and trust in digital care. 

The discussion explored how digital and face-to-face services can complement one another, and the importance of involving patients in the design of healthcare services. Broadcast on national television, the event highlighted how digital health tools can improve access to care while still meeting the needs of patients. 

Alpha1 Germany (Alpha1 Deutschland e.V.) has launched a new video featuring a conversation between Chair Marion Wilkens and scientific advisor Prof. Dr. Sabina Janciauskiene about the history of alpha‑1 antitrypsin deficiency and how understanding of the condition has developed over time. 

The organisation has also launched a new podcast, Alpha1 – gut gehört, which aims to connect patients, families and healthcare advocates while raising awareness of this rare condition. Upcoming episodes will feature expert insights, personal stories and practical information for people affected by the condition. 

The Colombian Foundation for Lung Cancer, Asthma, COPD and Other Respiratory Diseases (INSPIRAT) led the first Latin American meeting of lung cancer leaders as part of the Colombian Association of Hematology and Oncology’s 9th  Lung Cancer Update Symposium in Bogotá. This event brought together leaders from 10 countries to explore ways to improve care and quality of life for people living with lung cancer. 

The meeting provided an opportunity to share experiences, discuss common challenges and strengthen regional collaboration. Participants highlighted the importance of improving access to diagnosis, treatment and support, while promoting care that places patients and their families at the centre of decision-making.