Patient Organisation Round-up: March 2025

Jean-Paul Vasseur, vice-president of the French Federation of Associations of Patients with Respiratory Insufficiency or Handicap (FFAAIR), represented the European Federation of Allergy and Aiways Diseases Patients’ Associations (EFA) at the European Parliament recently. 

He discussed the COPD standards of care report, published by EFA, and how this can be used to identify the current gaps in COPD care, share best practices and highlight key policy recommendations.  

Read the report. 

Maria Neira, director of the Department of Public Health and Environment at the World Health Organization (WHO), has been named the ‘COPD Ambassador’ of the Spanish Patient Organisation of COPD (APEPOC).  

Upon receiving the title at a recent event, Maria highlighted climate change and air pollution as an urgent public health issue. Patients, professionals and political representatives attended the event and APEPOC looks forward to working alongside Maria to prioritise air quality and lung health.

Read more. 

ALK Positive UK has launched a new website to better support people affected by ALK-positive lung cancer in the UK. Over the past 6 years, the website has grown significantly, and members shared that it had become difficult to navigate.  

Based on their feedback, the new site focuses on making key information more accessible, particularly for people who have just been diagnosed with the disease and their families. It now also serves as a resource for healthcare professionals, offering patients trusted information and support networks.  

Website users can find details about upcoming events under the “Get Involved” and “Conferences” sections. ALK Positive UK encourages patients to share their feedback on the new site.

Representatives from MNT Mon Poumon Mon Air and the ELF Bronchiectasis Patient Advisory Group (PAG) attended the 4th European Bronchiectasis Workshop (EBROW) from 20 to 22 February in Paris. The event was an opportunity to discuss the latest topics in bronchiectasis. 

Patients were invited to share their insights in several sessions. MNT Mon Poumon Mon Air thanks Professors Pierre-Régis Burgel, Francesco Blasi and James Chalmers for co-organising the event and giving patients a platform to share their experiences.

The Alliance for Pulmonary Hypertension (AFPH) has launched a new webinar series called “What’s new in PH.” The aim of the series is to provide a quarterly update on the condition’s latest research, new treatments and patient-led initiatives. 

Their first webinar will take place on 26 March and will discuss the key messages from the Pulmonary Vascular Research Institute (PVRI) Pulmonary Hypertension Conference, which took place in Brazil earlier this year. Learn more.

Recordings will be made available on the AFPH website after the event in 40 languages.

The MATIO Foundation recently organised the 24th National Cystic Fibrosis (CF) Week which took place from 24 February to 2 March. The campaign aims to raise awareness of CF and its symptoms, diagnosis and therapy. This year, the MATIO Foundation called for improved access to treatments in Poland.

Learn more. 

The Association of Patients with Primary Ciliary Dyskinesia (ADCP) held its annual meeting in Créteil last month. The event featured the latest updates in PCD research and discussions on future priorities.

Many PCD patients attended, benefiting from physiotherapy workshops and networking opportunities. ADCP remains committed to raising awareness of the condition.

Learn more. 

Respiriamo Insieme has recently co-authored 2 articles:

• “The Impact and Burden of Chronic Rhinosinusitis with Nasal Polyps on Patients and their Family Caregivers”published in Healthcare, explores the impact of chronic rhinosinusitis on quality of life and sleep. Read the article.
• “Expert opinion on gray areas in asthma management”, published in Clinical and Translational Allergy, highlights the current challenges in asthma management and seeks to bridge the gap between clinical guidelines and practice. Read the article.

Respiriamo Insieme hopes its involvement will contribute to improved care for people living with chronic diseases and encourages other patient organisations to support scientific research.

The NTM and Bronchiectasis Patient Conference 2025 will take place from 14-15 May at the Claremont Club and Spa in Berkeley, California. The event will provide patients and caregivers with the latest research on NTM and bronchiectasis, as well as strategies for managing the condition. Participants can attend the event in person or online.

This year’s event will feature insights from people living with NTM and bronchiectasis, empowering attendees to become lung health advocates. All sessions will be recorded and available for registered attendees for 90 days after the event. Register here.

The Belgian Lung Foundation (BeLF) is excited to take part in the “20km of Brussels” event on 25 May.  

100 runners and walkers have already signed up to be part of BeLF’s “Run for your lungs” team, which is now at full capacity. Together, they aim to increase the visibility of BeLF and highlight the importance of lung health and advocacy.

BeLF will also run a stand offering fun and educational activities to raise awareness of prevention, including stopping smoking, breathing clean air and taking part in physical activity.

Learn more. 

Cystic Fibrosis Europe (CFE) is hopeful for the rare disease community following the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP)’s recent approval of triple combination therapy for CF patients aged 2 and older with a specific genetic variant.

CFE believes this development will improve the quality of life for rare disease patients and continues to advocate for timely access to treatment.

Learn more. 

EUFOREA has lauched a new Patient Portal to support people living with lung conditions. The first module focuses on chronic rhinosinusitis (CRS), helping patients and their families to better understand the disease.

The portal includes the following resources:

• Educational materials to explain CRS
• Videos from experts discussing diagnosis and treatment
• Practical tips to help patients prepare for consultations and navigate their journey

Visit the Patient Portal.