Patient Organisation Round-up: September 2025

The Aspergillosis Trust is celebrating the launch of the new children’s book, Dad and the Sneaky Spores, written by award-winning author Christina Gabbita and illustrated by Ursula Hurst. The book was published in August, and was specially commissioned to help children understand aspergillosis in a gentle and accessible way, while also raising much-needed awareness of the condition. Through gentle storytelling and colourful illustrations, children are introduced to the challenges of living with aspergillosis, as well as the importance of resilience, understanding, and support. This book marks a milestone as a significant step in the charity’s ongoing mission to provide education and advocacy for those affected by aspergillosis. The Trust hope to see the book making its way into multiple settings, such as schools and healthcare facilities, sparking important conversations and helping to build understanding in the next generation.

There will be a book launch event on Saturday 13 September to celebrate the publication.

GAAPP marked a major milestone in August with the launch of its first-ever African & Middle East Alliance (AMEA) regional meeting in Lagos, Nigeria. The event brought together 12 member organisations from the region for their first in-person meeting. It focused on key areas such as raising awareness for respiratory and immunological conditions, advocating for better care and access to treatment, and pushing for increased investment in research.

Attendees also benefited from expert-led training sessions on engaging with governments and writing grant applications. The AMEA Alliance say they are just getting started, as they work with communities to build a powerful platform with the goal of improving the lives of patients and caregivers in the region.

The Latvian Pulmonary Hypertension Association recently unveiled a vibrant photo exhibition called The Sound of Flowers in Riga, capital of Latvia. The exhibition showcases stunning portraits of 10 people with disabilities, each wearing unique floral and plant arrangements. Of the ten models, four are individuals living with pulmonary arterial hypertension. More than just a display of images, “The Sound of Flowers” is a powerful, empathetic project designed to promote understanding of beauty and strength in all its forms. Following its debut, the exhibition will go on tour, bringing its powerful message to communities across Latvia.

The Organisation for Respiratory Health in Finland organised a nationwide outdoor exercise event on Ilma’s name day on 26 August. In Finnish, “Ilma” means air, and this day is dedicated to raising awareness about symptoms related to indoor air quality. The aim of the event was to encourage local lung health associations to organise their own exercise sessions in local parks or other outdoor areas. Across the country, 44 sessions were held in different cities, with nearly 900 individual participants. This event was also noticed in the national TV-channel 3, where exercise specialists were interviewed.

As summer ends, seasonal airway conditions like asthma and allergies often flare up. Stay ahead with quick and free access to trustworthy information on your airway disease, preparation forms for your doctor appointments, a better understanding of the diagnosis and treatment and more. Your lungs deserve a smooth season. Join today and take control of your respiratory health. EUFOREA’s patient portal currently has modules on asthma and chronic rhinosinusitis.

Following the launch of its Pre-Budget Submission, Backing Every Breath, Building Better Care, the Asthma Society of Ireland met with a number of key policymakers to highlight urgent priorities for asthma care. As part of this work, the Society met with Minister for Health, Jennifer Carroll MacNeill, to discuss the needs of the 450,000 people living with asthma in Ireland. The discussions addressed barriers to accessing cost-effective combination inhalers and gaps in care for people with severe asthma. They also highlighted the urgent need for additional respiratory specialists, including Advanced Nurse Practitioners, to strengthen services in both primary and secondary settings. Through these engagements, the Society continues to advocate for practical, evidence-based measures that will reduce asthma-related hospitalisations and deaths while improving the quality of life for people with asthma across Ireland.

Lung Cancer Europe are launching their 10th annual report, which will be the largest global survey ever conducted on lung cancer and mental health. With insights from over 2,200 people across 31 countries, this landmark report highlights the often-overlooked psychological and emotional impact of lung cancer, and what needs to change in care and support. The launch will take place on 18 October at ESMO in Berlin. Drinks and canapés provided, but the free tickets are limited, so reserve your ticket today.

Alpha1 Deutschland’s flagship publication for people affected by Alpha-1 Antitrypsin Deficiency (AATD), their families, and healthcare professionals has received a design update. With a modern layout and improved readability, the journal continues to provide a wealth of information and inspiration. It will include up-to-date research insights, expert articles on living with AATD, and patient stories that provide encouragement and practical tips for managing life with the condition. To make the content even more accessible, the journal is now available as an interactive flipping book – bringing the reading experience closer to a printed magazine, but in a convenient digital format. Available in German only.

As part of the PneumoLight Campaign, NEUMOAI have announced the 5th Global Conference for World Pneumonia Day, which will take place on November 12, from 13:30 to 16:30 CST in Guatemala. This year’s conference will bring together experts to discuss “Enhancing Diagnosis, Managing Oxygen Needs, and Tackling Antibiotic Resistance”, focusing on key strategies to improve pneumonia care worldwide. The event can be attended online or in-person, and registration is free.

The second 4th World NTM Awareness Day took place on 4 August. MNT Mon Poumon Mon Air came together with NTMir in Paris to support the awareness day, share resources and promote early testing to prevent delayed diagnosis.

Respiriamo Insieme’s has supported the creation of a practical guide to nutrition and lifestyle for people living with bronchiectasis. The collaborative project has two main goals: to increase patient awareness of the importance of nutrition at different stages of the disease and to raise awareness among clinicians of the need to integrate nutrition into the care of people with bronchiectasis. The guide emphasises that everyday choices matter, and that healthy living can give you more energy, support your immune system, and even reduce symptoms.