Patient Organisation Round-up: February 2026

COPD is a complex, chronic lung disease that causes shortness of breath and can significantly reduce quality of life. PerMed-COPD, a clinical research platform at Philipps University of Marburg, hopes to make a difference by improving patient experiences. Using scientific methods to research individually tailored therapy, the project aims to develop personalised diagnostic and treatment approaches for people living with the condition. Alpha1 Germany has supported this project for several years, contributing the perspectives and experiences of those affected and ensuring patients play a central role in its development.

Patients are invited to join the PerMed-COPD webinar series. These online information sessions offer insights into the research project, ongoing developments and the role of personalised medicine in COPD. It also provides opportunities for questions and discussion. Participation is open to all people living with COPD who are interested in learning more.

Please note that webinars will be held in German.

In high-density informal settlements, breathlessness is often normalised until it becomes a crisis. The PinkTree Foundation and Make a Difference (MAD) have teamed up with the aim of breaking this cycle by using AI-enabled vocal biomarkers and grassroots mobilisation. Together, the teams hope to bring healthcare from the hospital to the doorstep, transitioning from reactive healthcare to proactive prevention.

The organisations focused on Rashid Compound, a densely populated slum in Mumbai, India, to transform it into a “respiratory-safe” community through early detection and environmental advocacy. As a result, 56 people received screening for respiratory risk, and 70% received their first-ever lung health diagnosis. Community engagement and trust was made possible through MAD’s local leadership.

The initiative has provided a data-driven blueprint for scaling early-detection lung clinics across Mumbai’s most vulnerable zones. The approach combines on-ground screening with digital follow-up via the PinkTree Health App.

MNT Mon Poumon Mon Air recently attended the 30th annual Congress of Pneumology of the French Language (CPLF) 2026 in Lille. Organised by the Société de Pneumologie de Langue Française (SPLF), this congress brings together experts in pulmonary medical and para-medical care, research and the pharmaceutical industry.

The event offered networking and learning opportunities, including presentations on advances in pneumology. RespiFIL, the health sector for rare respiratory diseases, joined MNT Mon Poumon Mon Air at the congress. The President of the association and a patient, Lorette, represented the association to talk about lung disease in NTM and showcase their work. MNT Mon Poumon Mon Air thanks the SPLF and RespiFIL for allowing them to raise awareness of lung disease in NTM.

The BronQ Family Study, led by The Global Foundation for the Care of Newborn Infants (GFCNI), explores the long-term challenges faced by families after preterm birth, especially when children are affected by Bronchopulmonary Dysplasia (BPD) or other lung problems. The Foundation is inviting parents of children born preterm and currently under 18 years of age to complete an anonymous online survey. Participation in the study will help shape better support and care in the future. This survey is open until the end of February.

As part of its educational project “PH Academy”, PHURDA, in collaboration with the IT College of Lviv Polytechnic, held an online session on free training opportunities through the Cisco Academy platform for patients with pulmonary hypertension and their families.

Participants learned how to access online courses on Cisco Academy, including course structure, duration and available topics such as network technologies, digital and cybersecurity, artificial intelligence and digital transformation.

In the context of war in Ukraine, this opportunity is especially valuable, enabling PH patients to gain new skills, work remotely and feel valued. This is particularly valuable for those unable to perform physical jobs.

On 31 May 2026, the EUFOREA team will participate in the iconic 20 km of Brussels. Whether you are a seasoned runner or prefer a leisurely walk, this is a great way to support respiratory health while enjoying one of Belgium’s most popular sporting events. To join the EUFOREA team, email xander.bertels@euforea.org to secure a spot.