Patient Organisation Round-up: April 2025

Moje plíce recently attended the Health and Prevention Awareness Day at Prague Castle. This event brought health-focused organisations together with over 150 policymakers to discuss the steps that can be taken to prevent lung disease in Czech Republic.  

The organisation highlighted the common risks for lung cancer and its symptoms, the health benefits of stopping smoking and why screening programmes are important to detect the disease early. Moje plíce also used this opportunity to share information about its upcoming campaign ‘Be Cool – Don’t Smoke.’  

The organisation is pleased to see policymakers supporting patient organisations to raise awareness of the actions we can take to reduce the risk of disease and improve future health outcomes. 

The Associazione Italiana Bronchiettasie (AIB) recently helped to develop the second diagnostic therapeutic pathway (PDTA) for adult bronchiectasis. This document evaluates the current standards of care for bronchiectasis patients and highlights areas for improvement.

It marks the first time that patients have been involved in developing this resource. AIB thanks Professor Martina Bonifazi for allowing patients to share their insights and the common challenges faced by the bronchiectasis community.

The PDTA will be available from this month at the University Departmental Structure of Pneumology of Ancona. AIB hopes that it will be used to improve care in other hospitals in the future. 

Learn more.  

Asthma Association Netherlands and Davos recently hosted a webinar to highlight the real-life impact of living with severe asthma. Several healthcare professionals discussed: 

• The hidden challenges of severe asthma, including its impact on relationships

• Side effects from medication

• How to help your partner understand your condition and the ways they can support you

The association hopes the event will encourage more conversations in the clinic about the lesser-known effects of severe asthma and improve quality of life for those with the condition. 

Watch the recording. 

Registration is now open for the SarcoidosisUK annual Patient Day. This event is free to attend and will be held on 29 April from 10:15—14:45 CEST. 

It is a great opportunity to hear from experts on a range of topics, including: 

• Neurosarcoidosis

• The effects of sarcoidosis on the eyes

• Managing its symptoms, with a focus on extreme tiredness

• The latest research

The event will be recorded but patients are encouraged to attend on the day for the opportunity to ask questions to the speakers. 

Register here. 

“Too often, people with lung cancer are an afterthought. As a patient representative, I hope I can bring our voices into the heart of medical education.” 

Debra Montague, Chair of ALK+ UK and Vice-president of Lung Cancer Europe (LuCE), has taken on a new role as Patient Representative on the Medscape Faculty Steering Committee. 

Debra will share her experiences and help educate healthcare professionals on what it is like to live with the condition and how care can be improved.

EUFOREA will hold the 4th edition of its Global Nasal Polyp Syndrome Awareness Day on 24 April in Brussels. 

Many people with chronic rhinosinusitis and nasal polyps (CRSwNP) are diagnosed late and do not receive the care they need. This year’s event will focus on ‘New Ambitions of Care’ for the condition. It will feature panel discussions with patients and explore how healthcare professionals and policymakers can do more to improve care.

Learn more. 

After being named ‘Organization of the Year’ at the 2024 Patient Partnership Awards, FairLife Lung Cancer Care (LCC) continues its commitment towards improved awareness and disease prevention. 

The association is organising 2 awareness events in Patras and Crete this year. These aim to educate the public about the ways they can reduce their risk of lung cancer and how getting diagnosed early can improve outcomes. 

FairLife LCC is also excited to launch its first accredited training programme (named ‘OncoNoesis’) for lung cancer nurses in Greece. The programme aims to improve the quality of care by sharing knowledge and offering mental health advice to professionals.

The French Federation of Associations for Patients with Respiratory Insufficiency or Handicap (FFAAIR) had a stand at the Senior’s Fair in Paris from 12-15 March. 

The event brought together nearly 40,000 members of the respiratory community to raise awareness of the different lung diseases and how exercise can help manage symptoms.  

Liliya Belenko Gentet represented FFAAIR at the event and highlighted the impact of sleep apnoea. She spoke about its risks, effects on quality of life, and the importance of screening.

Learn more.  

In March, Respiriamo Insieme launched its writing competition named ‘Scritture in Rosa.’ 

COPD is becoming more common but many people do not understand the impact it has on women. This contest aims to make the voices of women with COPD heard, from sharing insights on their diagnosis journey to how they manage their wellbeing.

Respiramo Insieme hopes that the competition will empower more women to advocate for their condition and improve their quality of life. 

The 5th annual ELF Bronchiectasis Patient Conference took place on 15 March. It was a great opportunity to learn more about bronchiectasis from patients and healthcare professionals and understand how to manage the condition. 

Justine Hamaide, MNT Mon Poumon Mon Air, co-chaired the first session of the conference alongside Dr Mattia Nigro. They discussed the condition’s impact on quality of life and brought the bronchiectasis community together to explore current and future research.

Watch the recording.

Oksana Kulish Skara recently represented the Pulmonary Hypertension Association of Ukraine (PHURDA) at GAAPP’s International Respiratory Summit. 

The event was held in Amsterdam this year and brought together patient advocates with policymakers and experts to discuss how patient outcomes can be improved globally. Oksana played a vital role in sharing the challenges currently faced by patients and healthcare providers in Ukraine.

Lisa McNeil recently represented the Aspergillosis Trust at GAAPP’s first ever Respiratory Patient Advocacy Summit, alongside advocates from over 30 countries.  

The summit gave patients the chance to collaborate on shaping policy and increasing awareness of lung diseases.