Patient Organisation Round-up: March 2026

Members of the MNT Mon Poumon Mon Air attended a special event in Paris to mark Rare Disease Day on 28 February.

For the occasion, the colonnade of the National Assembly was illuminated in the colours representing rare diseases – green, pink and blue – with the support of the Alliance Maladies Rares.

Three members of the association, including two patients, attended the event to show solidarity with the rare disease community and raise awareness of lung disease caused by non-tuberculous mycobacteria (NTM).

The MATIO Foundation is organising the 25th National Cystic Fibrosis Week, a nationwide social and educational campaign dedicated to raising awareness of cystic fibrosis and supporting people affected by the condition.

This year’s theme, “Cystic Fibrosis – 30 Years in Service to Patients – The Power of Action,” highlights decades of advocacy, research and education led by organisations such as the MATIO Foundation.

The campaign will showcase advances in scientific research and modern therapies, while emphasising the importance of ongoing education, collaboration and systemic support for patients and their families.

The Belgian Lung Foundation is offering an educational parcours titled “Protect Your Lungs!” at Train World.

Visitors exploring the museum can search for 10 stickers featuring the foundation’s lung mascot. Each sticker includes a QR code linking to information about lung function and how to protect respiratory health.

Respiratory diseases affect around 1.3 million people in Belgium, making awareness and prevention particularly important. The parcours is designed for visitors of all ages and will run until 19 April 2026.

FairLife Lung Cancer Care has launched a nationwide TV awareness campaign in Greece to highlight the importance of lung cancer prevention and early diagnosis.

The campaign will air throughout March 2026 on major national television networks. Its central message is that “anyone with lungs can get lung cancer,” emphasising the importance of screening and early detection.

The campaign also features the support of Greek actor and director George Karamichos.

PHA Europe has completed its “Without You, There Would Be No Us” campaign, which ran throughout 2025 and into early 2026.

The campaign shared more than 35 stories from people living with pulmonary hypertension, alongside carers, doctors and advocates who support them.

The initiative generated more than 245,000 organic impressions on social media, highlighting the strength of the pulmonary hypertension community and the importance of collaboration in improving care.

The Belgian Lung Foundation will participate once again in the 20 km of Brussels on 31 May 2026 with its “Run / Walk for your Lungs” team.

Runners, walkers, handisport athletes and supporters are invited to join the team and raise awareness of respiratory health while taking part in one of Belgium’s most popular sporting events.

Participants are encouraged to sign up with family members, friends or colleagues. Registration closes on 18 March 2026.

SarcoidosisUK has launched the Research Innovation Award 2026, part of its strategy to increase investment in research into Sarcoidosis.

The programme supports innovative research proposals aimed at improving understanding of the disease, developing better treatments and addressing quality-of-life challenges faced by patients.

Applications are open until the end of April. The charity also expects to announce the successful applicants from last year’s funding round soon.

The Association Dyskinésie Ciliaire Primitive (ADCP) held its annual general meeting in January, during which members approved the 2025 activity report and elected a renewed board of directors.

Emilie Trompat has taken on the role of chairperson and will lead the organisation over the next three years with a committed team.

The association plans to strengthen awareness of Primary Ciliary Dyskinesia, support research and continue expanding its work internationally to improve support for patients and their families.

Lung Cancer Europe has launched Lung Cancer Europe News, a new online platform providing updates on lung cancer policy, research and advocacy across Europe.

The site offers multilingual access, allowing visitors to read content in several languages and making lung cancer information more accessible across different countries.

By bringing together news from Lung Cancer Europe and its member organisations, the platform aims to support knowledge sharing and strengthen collaboration within the lung cancer community.

PHURDA is providing psychological support for people living with respiratory diseases and pulmonary hypertension during wartime conditions in Ukraine.

The project offers individual consultations with psychologists as well as monthly online group meetings where patients can ask questions and share experiences.

The initiative aims to help patients manage anxiety and breathing difficulties, recognising the close link between emotional wellbeing and respiratory health.