NTM Patient Care UK was delighted to be able to represent our charity at the European Lung Congress 2025 which took place over 5 days in the enormous RAI centre in Amsterdam. https://www.rai.nl/e

There were 20.000 delegates, zillions of staff helpers, a massive sales exhibition full of specialised medical equipment, related industry and big pharma, PHD students, poster presentations, researchers, charities, hospitals, patients and clinicians. In all of these spaces and lecture halls. There was a talk going on about every imaginable aspect of Lung Health at any given time between 07:00 - 20:00, (unless eating :-)!

If you would like to watch highlights from the congress that we attended, you can register on the ERS channel here. It’s free and viewable from 8th October. https://channel.ersnet.org/media-114678-ers-vision-live-ers-congress-2025-highlights

Myself and Dr, fellow patient volunteer Fiona got NTM Patient Care UK enrolled with ELF member tickets, we separately sourced crucial funding for which we are so appreciative and without which it would not have been possible to attend; NTM PC created flyers, pens and T-shirts; we booked ourselves flights and accommodation, took time out, collaborated, mustered energy, prepared and went along to this annual congress to promote NTM Patient Care UK and bring news back. It was epic.

*(see Fiona’s congress blog here - https://www.ntmpatientcare.uk/news/ers-congress-amsterdam )

ELF = European Lung Foundation, is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care. ELF has an open to all, Europe-wide patient organisation network and directory that you can search by region or disease. More info here - https://europeanlung.org/en/

ELF are members of the umbrella group - ERS = European Respiratory Society, which is the largest scientific and clinical organisation in respiratory medicine in Europe. Members are scientists, clinicians, allied healthcare professionals and other experts from around the world. ERS is one of the leading medical organisations in the respiratory field, with a growing membership spanning over 160 countries. ERS prioritises science, education and advocacy to promote lung health, alleviate suffering from disease and drive standards for respiratory medicine globally.

ERS offers, as far as I can see, everything you could imagine might be needed and wanted from a society of more than 35,000 clinicians, scientists and allied health professionals who are part of this comprehensive lung-health community. They actually make a vast organisation feel human and exciting. Their motto is ‘Every Breath Counts’. ERS advocates Patient Experts and champions representing the voices of people like us, with lived experience. I would recommend having a nosey on their website - https://www.ersnet.org/

I’m going to give you just a few random learnings and slightly subjective take-homes from the congress in this blog now. There was so much Science that I could never accurately report. (My note books need disseminating to feed into my Graphic Medicine project which I will write about another time)

I have come home a little more afraid of my own lung diseases, having heard statistics and prognosis broken down. It’s more chronic than I understood. I feel informed to the point of overwhelm, but a lot more impressed by doctors, the world of science and allopathic medicine. I reckon you would have come away similarly.

(*Allopathic medicine is a term for the conventional system of medicine that uses treatments like pharmacological drugs, surgery, and radiation therapies to address symptoms and diseases. It is an evidence-based practice that relies on clinical examinations and screening to diagnose conditions and seeks to demonstrate the safety and efficacy of treatments before they are approved and used. In essence, when you encounter a doctor with an MD, they are practicing allopathic medicine, a system focused on scientifically supported and widely available treatments for diseases.)

The congress included fascinating talks on environment, sustainability, and the decarbonisation and greening of lung-care. For example, Measured Dose Inhalers (MDI) are worse for the environment than Dry Powder Inhalers (DPI). Devices contain plastic, and MDI’s use propellants that contribute to global warming. However, poorly controlled asthma creates its own carbon footprint too!

You might be surprised to discover that in Finland there are estimated to be around 3.3Million saunas! That is roughly the same number of saunas as cars in that country! Most of the saunas are heated by burning pine wood, which is as causal of potential lung irritation as cars are and certainly negative environmental factors! We heard about a Finnish lung-charity that distributed 10,000 pine-seed discs in an attempt to get people out into nature to improve their health and walk about planting more trees in support of lungs, both personal and global. There was not a verdict discussed (that I heard) on NTM and sauna use, though it is agreed that steam rooms are not good for compromised lungs.

We learned that different countries have varied standards of care, protocols, measures and guides for when to treat and how. For example, some experts believe that hypertonic and isotonic nebulized saline is unquestionably useful at different percentages for treatment, and ditto for lung rehabilitation; others thought not. Experienced professional professors, consultants, researchers and organisations presented to peers their detailed, evaluated evidence for what they believe is best practice, methods of predicting outcomes, treatment results and interesting findings and anomalies. They were sharing information, teaching and learning together.

I watched countless powerpoint presentations, took notes and photos and tried to keep up.Though always too many acronyms and science language that was very specialist and sometimes difficult to follow for me with just O level biology! It was great to have young Dr Fiona as patient rep’ friend and ally to help interpret acronyms.

It was interesting to hear an hour and a half of eminent speakers discussing ‘Threats to Science’, including from artificial intelligence, dissemination of populist opinions, such as conspiracy groups, governments removing funding for nebulous or political reasons, and the lack of training in communication that upcoming scientists and researchers receive in order to share their contemporary findings or respond in these changing times. We must encourage, value, fund and listen to unbiased and collaborative Science to keep it robust and cutting edge.

On the subject of changing communications culture, it was absolutely inspiring to see and hear the many Patient Representatives voices lauded and platformed at this congress and as a growing and valued inclusion by institutions developing best practices. Some communities don’t have much equipment or resources at all. We are very lucky to have the NHS. There are amazing individuals working in grass roots social enterprises in varied settings to educate and rally for lung health from prenatal to aged, and it was uplifting to hear about. There were moving films and interviews with real stories about patients and what they have done, sometimes alone, to improve the lot of those of us with lung disease. Ordinary people doing extraordinary things, most often fuelled by love and care; like parents fighting for future generations.

Raising awareness and connection between groups of patients and clinicians was a unanimous theme and a successful venture at this congress. Although in many ways the congress was overwhelming, it was clear that it is made up of many people taking many steps for the benefit of Health.

There are more bicycles than human beings in Amsterdam (estimated 900,000 bikes to 850,000 residents)! Bikes are beneficial to lung health, because they reduce overall air pollution by decreasing the number of cars used on roads obviously, which leads to cleaner air. Cyclists do inhale more air due to increased physical activity, but the reduction in pollutants from collective bicycle use allows the overall health benefits of exercise to outweigh the risks of pollution exposure! Amsterdam is intentionally designed to be less reliant on cars, focusing on bicycle and public transport infrastructure and it was an absolute delight to be there. The town planners need a shout-out. So many trees and nature strips are incorporated into their urban design. Loved it.Though we did experience some bike-rage at rush hour along the canals, especially around an old bird like me trying to avoid tram tracks and keep safe on the other side of the road wearing clogs and full of stroopwaffles.

Going to a congress with someone is bonding. Dr and fellow patient Fiona is young enough to be my daughter but clever enough to save my life. Fiona is a thoroughly inspiring, generous, warm and brave person who pushes herself to an impressive level of fitness, efficiency, dedication and faith in medicine. She gave our presentation at ‘World Village’. We planned and debriefed. We branched out and collaborated, becoming friends and colleagues of sorts, connected by our shared experience, and mission for NTM Patient Care UK. It wasn’t all easy, but we did it.

Fiona having a rest after leafleting and me taking my NTM PC UK t-shirt off at the end of conference on the last day.

‘Every Breath Counts’

Don’t give up. One step at a time. The sum is greater than the parts.

We have togetherness, brilliant science and brilliant minds on our side.

Thank you for reading these 1634 words.

ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog

ERS Congress, Amsterdam - Fiona’s Blog