Patient Organisation Round-up: May 2025

Global Nasal Polyp Syndrome Awareness Day took place on 24 April. This year’s theme focussed on ‘new ambitions of care’ for patients. EUFOREA brought together people with lived experiences of the condition to share what more could be done to improve outcomes in a patient panel discussion.  

Patients highlighted 3 main priorities:
 

• better education and patient resources 

• faster access to advanced therapies, including biologics 

• a more personalised approach to care 

Healthcare professionals then explored how these priorities could help improve services in a separate expert panel discussion.  

EUFOREA would like to thank the 20 patient and academic organisations who supported the events this year. 

Watch the recordings. 

PinkTree Foundation recently partnered with the DigiSwasthya Foundation to bring AI-driven lung screening to rural communities in Wafgaon, India. By monitoring changes in a person’s voice, this approach aims to speed up the diagnosis of lung disease and improve access to healthcare. 

Over 20 local residents had their lungs tested at the event and PinkTree Foundation hopes this initiative will improve outcomes for people with lung conditions in rural India. 

Alpha-1 Antitrypsin Deficiency (alpha-1) can affect the lungs, liver and skin but it is often undiagnosed. 

Alpha-1 Europe Alliance has launched a new campaign: The Viking Legacy. Based on research linking alpha-1 to Viking ancestry and developed with VML Italy, the campaign aims to raise awareness of the condition across Europe. 

Learn more about the campaign (available in 24 languages). 

The Dutch PIBO Foundation is celebrating raising over €35,000 to improve outcomes for children with post-infectious bronchiolitis obliterans (PIBO). It hopes these efforts will improve diagnosis and treatment for the condition. 

The organisation will continue its fundraising activities in June, when Roger will hike 250 kilometres across Mongolia for the Gobi March. He hopes to raise €50,000 while improving awareness of the disease which affects his young son. 

Learn more. 

Respiriamo Insieme launched the PerCORSA di Salute project on 12 April in Pescara, Italy. This initiative aims to raise awareness of long-term lung diseases and their impact through educational campaigns and free lung testing. 

This year, there will also be a relay race across southern Italy to promote the importance of physical activity in preventing and managing lung diseases.  

Learn more. 

Apnoici Italian Association APS recently shared a video reflecting on the experiences of patients who took part in the Pyramid 24 Exploration and Physiology Expedition in Nepal.  

The association hopes that its activities will empower more people living with sleep and breathing disorders to advocate for their condition and improve outcomes. 

Watch the video. 

The Organisation for Respiratory Health in Finland (Hengitysliitto) has released information about the benefits of quitting smoking and how to help people stop.  

It highlights: 

• the importance of peer support for smokers, this can be over the phone or in-person 

• nicotine pouches and e-cigarettes are not effective replacements for tobacco 

• more action must be taken to stop the sales of tobacco to young people 

To mark World Pulmonary Hypertension (PH) Day, the Alliance for Pulmonary Hypertension launched a new educational campaign called ‘Patients Empowering Patients’ (PEP). 

As part of the campaign, a series of ‘PEP Talks’ will feature patients sharing practical tips for living well with PH. The series also gives patient advocates a platform to talk about their skills and how others can get involved in shaping healthcare. 

Learn more and watch the videos. 

PHA Europe recently led its annual social media campaign for World Pulmonary Hypertension (PH) Day. This year’s theme, ‘Sometimes, it’s PH’, highlighted the need for earlier diagnosis.  

Over 60 patients from around the world shared their experiences of diagnosis and living with PH. PHA Europe hopes the campaign will encourage more people to speak up about the disease and its impact.  

Follow PHA Europe on social media. 

ALK Positive UK has submitted a formal response to the UK Government’s National Cancer Plan which aims to improve diagnosis, treatment and care for lung cancer.  

By highlighting the challenges faced by people diagnosed with ALK+ lung cancer, the organisation wants to make sure the new guidelines meet the needs of people living with the disease and other rare, non-smoking related lung cancers. 

ALK Positive UK calls for better education on lung cancer and its risks, with more recognition that not all cases are caused by smoking and more personalised care for the condition.  

Associazione Italiana Bronchiettasie (AIB) recently attended the first edition of 104 – The Caregiving Expo in Pordenone, Italy. With a focus on caregivers and the challenges they face, this event was an opportunity for patients and associations to network with one another. 

AIB was eager to share best practice and empower caregivers to better manage their mental and physical health, when helping patients manage bronchiectasis. 

Learn more about the event. 

On 13 April, members of MNT Mon Poumon Mon Air attended the Poitiers half marathon in France to support a representative who participated in the race.

By wearing the organisation’s logo, they hoped to improve awareness of non-tuberculosis mycobacterial (NTM) infections and stand in solidarity with NTM patients.