Patient Organisation Round-up: November 2025

The Organisation for Respiratory Health in Finland (Hengitysliitto) has published its ‘Breathe in Nature’ guide as part of their contributions to the Nature Breathe project. The project is implemented in collaboration with Filha ry and is funded by the Ministry of Social Affairs and Health through organisational grants for 2024–2026. The guide focuses on research showing that spending time in nature benefits health and wellbeing. It provides practical information on these effects and encourages people to find suitable ways to include nature in their daily lives. The guide is free to download and available in Finnish.

The Slovak CF Association, together with Foundation MATIO (Poland) and the Ukrainian CF patient organisation, organised a two-day training in Kraków, Poland, as part of the Twinning Expansion Project developed by CF Europe. Due to the ongoing conflicts in Ukraine and Israel, Kraków was selected as a safe and more accessible location. A multidisciplinary CF expert team from Hadassah CF Center in Jerusalem provided practical training for healthcare professionals from CF centers in Zaporizhzhia, Odesa, and other regions of Eastern Ukraine. In total, 44 participants attended the sessions.

The team covered topics including pulmonary and extrapulmonary manifestations of cystic fibrosis, optimal treatment approaches, nutrition, physiotherapy, adherence, CF centre management, teamwork and daily patient care.

On 28 October, the Respiriamo Insieme press conference ‘Severe Asthma: an effective and sustainable model for diagnosis, management and patient care’ marked the first official recognition of severe asthma in Italy as a distinct condition with its own care pathway and exemption code. The organisation celebrated and called this “a decisive step forward for over 300,000 people in Italy who live with the disease.”

This milestone follows years of advocacy alongside patients, clinicians and institutions. Simona Barbaglia, president of Respiriamo Insieme, said the day represented the culmination of long-term work in the face of considerable resistance and an important recognition for people living with a complex and debilitating condition.

MNT Mon Poumon Mon Air was invited to present its work as an association at this year’s Humanitarian Forum in Paris. The 2025 theme focused on rare diseases and gave students and future health professionals the chance to explore solidarity initiatives, understand opportunities in humanitarian work and learn what is required to lead a successful associative project. MNT Mon Poumon Mon Air met future pharmacists and other associations committed to solidarity. Participants were welcomed warmly and enjoyed pancakes made by students. It was a positive day of exchange and connection.

The Aspergillosis Trust has created a new leaflet, ‘Safe Gardening When You Have a Respiratory Condition and/or Aspergillosis’. Developed by the Aspergillosis Trust, the ELF Aspergillosis Patient Advisory Group (PAG), and the National Aspergillosis Centre, the resource is filled with practical tips to reduce risks, protect yourself and continue enjoying time outdoors.

Lisa McNeil, Chair of Aspergillosis Trust, said: “Many of us find real comfort and joy in our gardens — they’re peaceful spaces where we can connect with nature. But if you have aspergillosis or another respiratory condition, it’s important to take a few extra steps to stay safe while gardening. This leaflet will help you to do just that.” The resource is free to download on the Aspergillosis Trust website.

In some countries, a lung transplant can be an option for people with end-stage COPD to improve quality of life and extend life expectancy, although it is not a cure. People will need to continue managing their condition through lifestyle changes, medication and close medical monitoring after the surgery.

The optimal timing for a transplant is complex due to COPD’s slower progression compared to other diseases. Access and eligibility criteria can also vary across European countries. Patients of APEPOC and people living with COPD and their families are asking for more information about available options and national differences in access to transplantation. A webinar will be held shortly to provide more information.

EUFOREA are hosting a one-day course to help people living with asthma, COPD, respiratory allergies or chronic sinus disease. Join them on 17 April 2026 at the Royal Academy of Medicine in Brussels for the Patient Experts in Airways and Respiratory Leadership (PEARL) course. The event offers the chance to learn directly from international experts, better understand your condition, connect with other patients, share experiences and discover how small changes can make a meaningful difference. Participation is free, including lunch and coffee breaks. Travel support is available for international attendees and early registrants are eligible for one night of hotel accommodation and travel reimbursement.

On 30 September 2025, a group of paediatricians and researchers took part in the Take the Active Option event at the ERS Congress in Amsterdam. They used the event to support the PIBO Foundation, a Dutch organisation founded by families of children affected by Post-Infectious Bronchiolitis Obliterans (PIBO). The foundation raises awareness, supports families, and promotes research and initiatives to improve care for those living with this rare, incurable lung condition. It was a morning filled with energy, connection, and purpose. With every step, the RUN FOR PIBO team helped shine a light on this important cause and showed their support for the inspiring families and children behind it. Together, the participants sponsored the PIBO Foundation with more than €1200.

The theme of this year’s Annual Pulmonary Hypertension European Conference in Barcelona focused on PH-ILD (pulmonary hypertension-interstitial lung disease), a severe form of PH that is accompanied by fibrosis and lung tissue damage. PHURDA representatives discussed the potential for future clinical trials in Ukraine for people with ILD and PAH and received encouraging feedback. This marks progress towards Ukrainian patients being able to participate in international studies and have access to innovative treatment.