Patient Organisation Round-up: June 2025

ALK Positive UK has developed a new resource that shares best practices for brain imaging in people with ALK+ lung cancer.  

People living with the condition are at a higher risk of cancer spreading to the brain, known as brain metastases. 1 in 4 patients already have brain metastases when they are diagnosed. Although regular imaging can help improve outcomes, people living with ALK+ lung cancer in the UK do not receive routine MRI scans.  

This new resource, endorsed by Brainstrust, aims to address this gap. It recommends: 

• MRI scans twice a year for people without known brain metastases 

• MRI scans once every 3 months when cancer has spread to the brain 

While the resource is aimed at lung cancer specialists, people living with ALK+ lung cancer are also encouraged to take the information to appointments.

Download the resource. 

Hengitysliitto, the Organisation for Respiratory Health in Finland, represented the voices of patients at an environment workshop on 3 June. It discussed how Uusimaa, Finland is developing a regional climate change adaptation plan and why patients’ perspectives must be considered at every stage.  

Hengitysliitto hopes these efforts will contribute to a climate-resilient Uusimaa by 2050.  

Learn more. 

The Spanish National Association of Patients with Chronic Obstructive Pulmonary Disease (APEPOC) has received an award from the Spanish Association of Vaccinology for its project, ‘Breathe safe. Promotion of vaccination in COPD and beyond.’ Conducted in collaboration with the University Hospital in Madrid, the project emphasises the importance of vaccination in supporting the health and wellbeing of respiratory patients.

The association hopes that by raising awareness, outcomes for people with lung conditions can be improved. Learn more. 

SarcoidosisUK recently launched its Research Innovation Award 2025. This initiative is the first of 3 annual research awards to encourage more research into sarcoidosis.  

SarcoidosisUK hopes the awards will support: 

• The development of new research

• The evaluation of existing scientific ideas

• Exploration of proposals aligned with the organisation’s priorities 

Learn more and apply before 30 June. Successful applicants will be announced in October. 

The Irish Vaculitis Organisation (IVO) hosted its 5th annual ‘Wear Red’ campaign in May to mark International Vasculitis Day. Landmarks across the United Kingdom were lit up in red to show solidarity with those living with the condition.  

Vasculitis is a rare condition that can affect the lungs and many people, including healthcare professionals, have not heard of it. Stephanie Skeffington, co-founder of IVO said: 

“People living with vasculitis can face very difficult experiences. Vasculitis is a rare rheumatic condition and many respiratory consultants do not see this in the clinic. The ‘Wear Red’ campaign is vital to improve education and awareness of the condition and ensure those living with it feel less isolated and alone in their journey.” 

IVO is committed to making the voices of people living with vasculitis heard and hopes the campaign can reach more people next year.

To mark 10 years of raising awareness, EUFOREA recently hosted a symposium event in Brussels, titled ‘Shaping the Future of Respiratory Care.’ The event brought patients and experts together to discuss how long-term lung conditions could be better managed. Speakers emphasised the importance of prevention, timely diagnosis and involving patients in the development of new treatment pathways.

Watch the recording. 

In May, 2 representatives from Plava krila walked 1100 kilometres across the Via Adriatica Trail in Croatia to raise awareness of pulmonary hypertension (PH). The campaign, named ‘1100km Breathless for PH’, highlighted the challenges people living with the condition face.  

The representatives have also set up a GoGetFunding campaign to raise money for Plava krila, where they aim to raise €1100 – one euro for each kilometre. Plava krila hopes its efforts will empower more people living with the condition to make their voices heard and support further awareness efforts.

Learn more. 

On 15 May, MNT Mon Poumon Mon Air (MNT) attended the Rare Diseases Foundation’s Annual Scientific Symposium in Paris. The event highlighted the latest advances in research and the ongoing challenges in rare disease care.

MNT shared information about its activities and its commitment to improving research and care for individuals with non-tuberculosis mycobacterial (NTM) infections.

The French Federation of Associations with Respiratory Insufficiency or Handicap (FFAAIR) hosted its 36th national congress in Amiens, France. The event focussed on how we can improve air quality, common issues faced by caregivers and the role of exercise and healthy eating in respiratory health. 

The organisation thanks those involved in the event and looks forward to networking with more representatives next year. 

Learn more. 

The Colombian Foundation for Lung Cancer, Asthma, COPD and Other Respiratory Diseases (INSPIRAT) recently held a webinar for World Asthma Day. The event aimed to raise awareness of asthma, and speakers discussed:

• Asthma as a condition with multiple triggers 

• Anxiety and depression as risk factors and the need for stronger mental health support 

• The impact of early life experiences on asthma development

Watch the recording.  

To mark World Pulmonary Hypertension Day, the Pulmonary Hypertension Society of Latvia co-hosted its Oxygen Festival with Pauls Stradins Clinical University Hospital. The event welcomed 135 participants and provided:

• Exercises to support wellbeing

• Talks addressing discrimination of people with disabilities 

• Patient-led insights on improving mental health

Event volunteer, Arta Krūze said: “The Oxygen Festival was more than just an event – it was a moment of inspiration. For seniors and people with disabilities, it was an opportunity to check their health, learn about the association’s work, and simply be together. I was touched by the moment when people wrote their dreams on paper – such a seemingly small step, yet so significant.” 

Learn more. 

Pulmonary hypertension is a rare condition and many healthcare professionals have limited knowledge about its impact. The Pulmonary Hypertension and Scleroderma Patient Assocation (PAHSSc) recently worked with students from Gazi University to amplify the voices of people living with the condition for World Pulmonary Hypertension Day. 

Follow PAHSSc on LinkedIn for more insights. 

The Alliance for Pulmonary Hypertension recently launched its new video series, titled ‘PEP Talks.’ The videos share information about living with and managing pulmonary hypertension (PH) through patient stories and have already been watched by more than 2000 people.

Its next series of videos will be launched on 15 June. Learn more.   

Respiriamo Insieme recently attended a meeting in Piedmont, Italy where it discussed a new care plan for people with long-term lung conditions. Representatives met with policymakers to share their insights and Respiriamo Insieme hopes its efforts will improve outcomes for patients in Italy.