Patient Organisation Round-up: July 2026

The Dutch PIBO Foundation works with children and families affected by post-infectious bronchiolitis obliterans (PIBO). On 25 June, the organisation gave a presentation at the International Society of Pediatric Respiratory Diseases Congress in Bologna.

Drawing on the experiences of families living with PIBO, the presentation highlighted the condition’s impact on everyday life and the emotional toll it can take on both children and caregivers. The Foundation also called for improved diagnosis, better coordination of research and care, and announced plans for an international survey to better understand the needs of parents and caregivers.

Lung Cancer Europe represents and advocates for people affected by lung cancer across Europe. The organisation has published its 2026 Mid-Year Report, outlining progress made during the first half of the year.

The report highlights work to improve access to treatment and biomarker testing, strengthen patient advocacy and launch new initiatives, including Lung Cancer Europe’s first annual conference and its new Charter. Published alongside the organisation’s updated identity, the report reflects ongoing efforts to ensure the voices of people affected by lung cancer are represented across Europe.

FairLife Lung Cancer Care works to improve information, advocacy and care for people affected by lung cancer. On 3 June, the organisation hosted the webinar “Treatment in Lung Cancer is Not the Work of One Doctor: It Takes a Team”.

The event attracted more than 1,680 viewers and brought together healthcare professionals, policymakers and people with lived experience to explore the benefits of multidisciplinary care. Discussions highlighted how closer collaboration between specialists can improve diagnosis, treatment planning and personalised care for people affected by lung cancer.

The Dutch Pulmonary Hypertension (PH) Foundation advocates for people affected by pulmonary hypertension in the Netherlands through information, advocacy and community activities. Last month, the organised hosted Children’s PH Day with the National Paediatric PH Expertise Center at the University Medical Center Groningen (UMCG).

While children enjoyed activities and a dolphin show, parents and caregivers had the opportunity to learn from healthcare professionals and connect with other families facing similar challenges. The event provided practical advice, peer support and a valuable opportunity to build connections within the PH community.

The Alpha‑1 Europe Alliance (A1EA) represents people living with Alpha-1 Antitrypsin Deficiency across Europe. The organisation has been recognised by the European Medicines Agency (EMA) as an eligible patients’ and consumers’ organisation.

The recognition gives A1EA a formal role in EMA consultations and regulatory activities. This will help strengthen the patient voice in discussions about medicines and healthcare, ensuring that the experiences of people living with Alpha‑1 Antitrypsin Deficiency are better represented in decisions that affect their lives.

Association MNT Mon Poumon Mon Air works with people living with rare respiratory conditions in France. In June, the organisation attended the Rare Diseases Alliance Congress in Paris alongside patient groups from across the country.

The event explored how people living with rare diseases can have a stronger voice in research, healthcare and decision-making. Discussions focused on collaboration with specialist centres, support for families and encouraging young people to become involved in advocacy. The congress also provided an opportunity to share experiences and strengthen connections across the rare disease community.

The Spanish Association for Empty Nose Syndrome (AESNV) advocates for people living with Empty Nose Sydrome (ENS), a condition that is often misunderstood and difficult to diagnose. In June, AESNV announced a new collaboration with Flowgy, a Spanish company specialising in nasal airflow analysis. 

Together, they plan to advance research, improve education and explore new ways of understanding ENS. The partnership will also help strengthen collaboration between patients, researchers and clinicians, to increase awareness of the condition and help more people find answers and appropriate care. 

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 National Health Action Force Nepal (NHAFN) is working to improve lung health across Nepal. Through its Swastha Saans Nepal (Healthy Breath Nepal) project, the organisation is delivering spirometry screening and lung health education directly in communities with limited access to these services.

By bringing testing closer to communities, the project aims to identify lung conditions, including asthma, COPD and bronchiectasis, earlier, enabling more people living with these conditions to access the right care and treatment.

LAM Support Ireland provides information and resources for people living with lymphangioleiomyomatosis (LAM), a rare lung disease. To mark Worldwide LAM Awareness Month, the organisation hosted an information display at St Vincent’s Hospital in Dublin.

The event helped raise awareness among hospital staff, visitors and the public, improving understanding of a rare condition that is often unfamiliar to many people.

The Aspergillosis Trust works with people affected by aspergillosis through advocacy, education and peer support. In June, representatives attended the 9th World Bronchiectasis Conference in Hannover, Germany, where they met with healthcare professionals, researchers and patient organisations from around the world. 

By sharing patient experiences, the Trust highlighted the need for earlier diagnosis, greater awareness and better care for people living with aspergillosis. The event also reflected growing recognition of the link between bronchiectasis and aspergillosis, and the importance of keeping patient voices at the centre of research and care. 

ALK Positive UK provides information, advocacy and peer connections for people living with ALK-positive lung cancer – a rare form of non-small cell lung cancer caused by a genetic alteration in the ALK gene. It often affects younger people and those who have never smoked. 

In June, the organisation launched Talking Points, a new guide designed to help patients prepare for appointments with their healthcare team. Developed with input from clinicians and people living with ALK-positive lung cancer, the guide helps patients know what questions to ask, feel more confident in discussions about their care and play an active role in decisions about their treatment and care.