Patient Organisation Round-up: January 2026

The German Alpha1 Journal has published its first online flipping book. This is a virtual version of the publications most recent edition. The journal provides regular, reliable information on key topics related to Alpha-1 Antitrypsin Deficiency. Its content is aimed at patients, relatives, self-help groups and healthcare professionals, combining medical expertise with personal perspectives from the Alpha-1 community.

This issue features a wide range of topics, from ongoing studies and research findings to reports on patient days and experiences, events and meeting opportunities. Medical highlights include articles on the link between bronchiectasis and Alpha-1, innovative therapeutic approaches such as DNA and RNA interventions, new digital tools to support inhalation therapy, Alpha-1 in children and the use of artificial intelligence.

The Alpha-1 Europe Alliance is starting 2026 with a renewed commitment to improving awareness and outcomes for people with Alpha-1 Antitrypsin Deficiency (AATD). Despite medical progress and increased European cooperation, thousands of people living with Alpha-1 still face delayed diagnosis, limited treatment options, fragmented care pathways and significant inequalities in access to care. These challenges often leave Alpha-1 patients overlooked in health policy discussions.

The Alliance aims to change this through its 2026 advocacy agenda, focused on ensuring timely diagnosis, high-quality care and equitable treatment for all patients across Europe. At the heart of this effort is Roadmap 2030, a five-year strategic framework promoting collective action across the Alpha-1 community. This framework is built around discussions with patient representatives, caregivers, clinicians, researchers, industry partners and policymakers to understand what matters most to the community. The Alliance hopes to unites the community around six shared priorities, addressing care gaps, reducing inequalities, and driving coordinated European-level action, ensuring that no Alpha-1 patient is left behind.

In 2026, the Pneumolight campaign will mark World Pneumonia Day (12 November) by illuminating iconic monuments in blue to raise awareness of pneumonia, a leading cause of preventable death worldwide. This global initiative aims to highlight the urgent need for prevention, diagnosis and treatment, while inspiring governments and health authorities to take action.

Pneumolight is working closely with national authorities, policymakers, and healthcare institutions to encourage the lighting of prominent buildings and monuments in blue as a visible symbol of the fight against pneumonia. Past campaigns have shown that such visual initiatives effectively capture public attention and reinforce the importance of collective action.

In December 2025, MNT Mon Poumon Mon Air attended ‘La Marche des Maladies Rares’ in Paris. The event was organised by Alliance Maladies Rares, the French collective of patient associations for rare diseases. The event involved a 6-kilometre walk through the streets of Paris, with participants carrying signs displaying the names of rare diseases.

MNT Mon Poumon Mon Air was represented by a small group, with several walkers taking turns carrying the sign for nontuberculous mycobacteria (NTM). At 22:30, walkers gathered on the set of the Telethon, the major collection operation for genetic diseases. The day was a great opportunity to give visibility to rare diseases such as Nontuberculous mycobacteria (NTM).

In December, the Italian Bronchiectasis Association released the first Italian White Paper on bronchiectasis. The publication marks a key milestone in increasing awareness and recognition of bronchiectasis as a chronic respiratory disease in Italy.

It is the result of years of collaborative work involving patients, caregivers, clinicians, researchers and healthcare professionals across the country. Designed as a practical reference tool, the document aims to improve knowledge, promote equitable access to care, and support informed healthcare decision-making. The White Paper is freely available for download from the Association’s website.

Alfa-1 España, the Spanish Alpha-1 association, will hold its next patient meeting from 8–13 September at the State Reference Centre for the Care of People with Rare Diseases and their Families (CREER) in Burgos, with the aim of providing a space for information, shared experiences and support for people living with Alpha-1 Antitrypsin Deficiency, their families and healthcare professionals. The programme will include expert-led presentations and opportunities for participants to share their experiences. The meeting is expected to play a key role in strengthening the Alpha-1 community and advancing knowledge, care and quality of life for those affected.

From 19–21 January, the Lovexair Foundation will attend the Radical Health Festival in Helsinki, one of Europe’s leading gatherings focused on health innovation, digital health and public policy. The Foundation will contribute to three key sessions and lead a workshop on integrating environmental data and citizen-generated health data to support a more preventive, precise and people-centred health system. Lovexair’s CEO, Shane Fitch, will moderate the opening plenary session on One Health and represent the Foundation in a key discussion on digital health transformation and patient access. These activities are underpinned by CheckAir, Lovexair’s entry point for respiratory health, population-level data generation and more informed public health decision-making.

ALK+ UK has launched the Brenda Cobb Hardship Fund was set up to provide practical financial support to people and families affected by ALK-positive lung cancer who are experiencing financial hardship. The fund was established by Callum Cobb in memory of his mother, Brenda, who died shortly after her diagnosis. The fund has already helped people within the ALK-positive community and can be used in a wide range of ways, including covering everyday costs such as household essentials, travel or car repairs. In some cases, it can also support private Next Generation Sequencing when NHS funding is not available. There are no strict conditions attached to the grants beyond experiencing financial hardship. Applications are treated in confidence and reviewed by a small panel.