Patient Organisation Round-up: April 2026

The Alpha‑1 Europe Alliance has launched “The Missing Piece”, a campaign to raise awareness of Alpha‑1 Antitrypsin Deficiency (AATD) across Europe.

The campaign highlights that many people with AATD remain undiagnosed and uses simple visual and educational tools to improve understanding of the condition.

The campaign aims to support earlier diagnosis and increase awareness among the public and stakeholders.

Respiriamo Insieme has launched the Maternal RSV campaign to raise awareness of respiratory syncytial virus (RSV) in infants, starting from pregnancy.

The initiative includes a dedicated website section and an ongoing social media campaign, providing information on prevention, early diagnosis, and daily management for families.

The campaign aims to support families with clear and accessible information from early stages.

The Lovexair Foundation and the Pulmonary and Heart Foundation are implementing a national campaign in Colombia to improve asthma care through an integrated approach combining diagnosis, education and treatment.

The programme has been delivered across several cities, reaching more than 200 participants and identifying a high level of unmet need, including poorly controlled asthma and previously undiagnosed airway problems.

The campaign supports earlier detection, improved disease control and greater patient empowerment. It also contributes real-world data to help inform future public health strategies.

A new education programme on Post-Infectious Bronchiolitis Obliterans (PIBO) has launched in the Netherlands, with support from the Dutch PIBO Foundation.

Training sessions for medical specialists and researchers focused on diagnosis, treatment and patient experience, with events held in Nijmegen and at Amsterdam UMC.

The initiative aims to improve awareness and support earlier diagnosis of this rare lung condition.

Amici Contro la Sarcoidosi Italia (ACSI) is holding its 5th National Conference on the Diagnosis and Treatment of Sarcoidosis in Rome, Italy, on 17–18 April.

The event brings together national and international experts to discuss current approaches to diagnosis, treatment and management, including quality of life and psychological support for people living with the condition.

A ‘Patient Day’ on 18 April will offer sessions where patients can hear from experts and ask questions about the condition.

MNT Mon Poumon Mon Air has presented its work to healthcare professionals in Paris and the Île-de-France region following an invitation from the Society of Pneumology of Île-de-France (SPIF).

The organisation also took part in an event dedicated to patient organisations at Hôpital Européen Georges Pompidou.

These activities help improve awareness of NTM lung disease and strengthen collaboration between health care professionals and patient organisations.

The Costa Rican Association for Pulmonary Hypertension and Respiratory Diseases is celebrating the certification of its president, Leidy Maritza, as a Patient Navigator.

After eight months of training, this qualification strengthens the organisation’s ability to guide patients and families through the healthcare system.

The association also recognises the support of the Patient Navigator Institute and Dr. Luis Ibarra in helping expand patient care initiatives in the region.

The Health from Nature programme, launched in Finland in March 2026, aims to improve wellbeing by increasing contact with nature in daily life and within health and social care services.

Hengitysliitto has played an active role in developing and implementing the programme, which focuses on preventing long-term diseases, including lung conditions.

The initiative is based on research highlighting the health benefits of nature.

The report “My Life with COPD”, published by the Polish Federation of Asthma, Allergies and COPD Patients’ Associations, was presented at the Patients’ Organization Forum in Warsaw, offering insights into the experiences of people living with COPD in Poland.

Based on qualitative research and expert input, the report explores diagnosis, treatment and the psychological and social impact effects of the condition. It aims to raise awareness and support improvements in care for people living with COPD.