Patient Organisation Round-up: November 2023

Catch up on the latest news and activities from patient organisations across Europe.

The Italian Sleep Apnoea Association attend the Sleep Apnoea & Sleep Disorders National Congress 2023

In September, the 2nd Sleep Apnoea & Sleep Disorders National Congress was held in Bari, Italy. Over 150 physicians attended, as well as important international guests and 80 patients. The special guest speaker was Professor Colin Sullivan, the inventor of CPAP, who gave a talk on the History of CPAP from 1980 to 2023.

A talk to get to know the French NTM association

On 14 November, the MNT Mon Poumon Mon Air association will hold a free online event. It will cover why the association was created and the need to advance the cause of rare NTM (Non-Tuberculous Mycobacteria) lung disease. Find out more and register here.


Maasai Mara BreathEasy Campaign

On 23–25 September, the Allergy and Asthma organization of Kenya held the Maasai Mara BreatheEasy Campaign in the Mbitini, Talek and Sekenani areas. The aim of the campaign was to advocate for and raise awareness amongst the people in these communities to stop using unsafe pesticides banned by the government, educate them on self-protection while using and handling pesticides, show them how to correctly store pesticides, sensitise them on the need to stop over-spraying these pesticides and highlight the improper handling of pesticide containers as they dispose them in the environment of the Maasai Mara Community. The campaign was in support of World Lung Day and aimed to reduce air pollution to protect human health.

The Aspergillosis Trust hosted an art exhibition titled ‘The Air that I Breathe’

The Aspergillosis Trust and Hive arts hosted a 2-week exhibition exploring the fundamental connectivity between breath, air and life itself. The exhibit was opened on World Lung Day by Tina Rothery who advocates for clean air. Alongside the art there was a full programme of events including a nurse practitioner offering free health checks. The NHS stop smoking team had a stand and there was also a talk from a leading expert on mould prevention. Everyone involved agreed that the exhibit highlighted aspergillosis and how the air that surrounds us impacts our lives.  There was also a range of fundraising activities, including 15 cyclists cycling from the Blackpool Tower to the Eiffel Tower and 5 runners taking part in the London Royal Parks Half Marathon.

The Italian Alpha-1 Association in short-form videos

In collaboration with medical specialists and patients, the Italian Alpha-1 Association are creating and sharing short videos that address and explain Alpha-1 Antitrypsin Deficiency.

INSPIRAT’s Webinar Compassionate Communities: Together for Palliative Care

INSPIRAT’s webinar marking World Palliative Care Day enabled attendees to learn from professionals from various fields. It delved into new laws in Colombia, demystified medical myths, explored the pivotal role of nurses and their care guidelines, emphasised the significance of social workers and family dynamics, and discussed psychological tools for better emotional management. The speakers underscored the importance of open dialogue about palliative care, not just for individuals facing terminal conditions, but also for those with chronic respiratory illnesses. It dispelled the misconception that palliative care is solely for people who are at the end of their lives, emphasising its integration early in the disease process. This integration, alongside ongoing treatments, enhances patients’ and families’ quality of life and eases symptoms. This webinar reached over 500 participants and received incredible feedback. People from various countries and regions actively participated, enriching and fortifying our community bonds.

GAAPP’s World Lung Day 2023 campaign

The world has been discussing lung health since the COVID-19 pandemic. We talk about global solutions to strengthen our healthcare and support systems. However, we often forget to give an actual global voice to the problem. The world is a very diverse place, and each country and region have different challenges when it comes to respiratory health. To provide a global perspective, Global Allergy and Airways Patient Platform (GAAPP) asked 11 global patient advocates and leaders of patient organisations from 8 different countries and three continents what was the biggest challenge for lung health in their countries. These testimonials were included in a short video that was shared on World Lung Day. GAAPP hope it will be a long-lasting advocacy and awareness tool that will support our efforts to prioritise chronic respiratory diseases with the WHO and its member countries.

APEPOC webinar about how microplastics affect respiratory patients

The relationship between the environment, respiratory health and microplastics is complex and can have significant implications for human health and the ecosystem in general. Microplastics can affect respiratory patients as they reach the respiratory system when airborne particles containing microplastics are inhaled. These can be transported to the lungs and remain there. The national association of COPD patients in Spain has developed an explanatory webinar and will publish a guide for the upcoming World COPD Day.

ALK+ UK: All You Need is Lungs

Throughout lung cancer awareness month, ALK+ UK will be highlighting some of the crucial facts about non-smoking lung cancers with campaigns targeting the public and healthcare professionals. It will feature real people who have been directly impacted by lung cancer. Their decision to be a part of these campaigns stems from a desire to prevent others from going through the same experience. They wish they had known earlier that even non-smokers and younger people can get lung cancer and believe this knowledge might have led them to seek help sooner. 1 in 5 people diagnosed with lung cancer are non-smokers. Between 80–90% of these are diagnosed at a late stage when treatment options are limited. The message is clear and simple: if you face persistent symptoms, consult your GP/family doctor, regardless of age or smoking habits. Medical practitioners should think about a chest X-ray or referral to a lung cancer pathway for those presenting with such symptoms.

The Italian Bronchiectasis Association holds its first fundraising event

On 12 October, the Italian Bronchiectasis Association (AIB) had the opportunity to hold its first fundraising event with the collaboration of Roberto Farci at his birthday party. It was an opportunity to collect many extremely valuable donations to continue their activities. One of the main missions since the beginning of AIB has been to be able to help and direct people who suffer from bronchiectasis to specialists. Thanks to the AIB’s scientific committee, dedicated bronchiectasis centres have increased in number, although they are still not present in all regions.

Alpha-1 Europe alliance established to advocate for access to best available care and therapies for all individuals living with alpha-1 antitrypsin deficiency in Europe

The European Alpha-1 antitrypsin deficiency patient community is proud to announce that, as of 17 October 2023, the Alpha-1 Europe Alliance, based in Belgium, is established and operational. For the past year, leaders of national alpha-1 patient organisations across Europe have been working to create an alliance that would represent individuals living with alpha-1 in Europe and advocate for access to timely diagnosis, individualised care, and holistic therapies.

More information will be available soon at

Asthma and sport go together!

The Association of patients with asthma, allergies and atopic dermatitis (AAA) of Bosnia and Herzegovina is part of the initiative of the Forum of International Respiratory Societies (FIRS) and GOLD that are calling on governments and healthcare providers worldwide to give equitable access to preventative services and treatments for respiratory conditions. The association organised free spirometry testing for patients as well as a group of football players with the aim of showing that children with asthma should not be stigmatised in sport.

PHURDA representatives participated in ERS Congress 2023

Representatives from PHURDA, the Pulmonary Hypertension Ukrainian Rare Disease Association, took part in the ERS Congress 2023, which was held in Milan this September. It was nice to see friends and meet new ones. PHURDA participated in the ELF Patient Organisation Networking Day and met with international colleagues and partners. It was very interesting to talk about the challenges that exist in each country. Of course, all colleagues expressed concern about the issues in Ukraine, listened very attentively and expressed words of support. In the World Village there were patient organisation stands, in particular ELF, where PHURDA communicated with colleagues and partners during social hours. In a friendly atmosphere, important topics were discussed, and new ideas were formed in synergy.

5th Ibero-American Summit for the Respiratory Community

On 5–6 December, Lovexair will be celebrating the 5th Ibero-American Summit for the respiratory community. This event brings together prominent figures and future leaders in respiratory and digital health for a gathering focused on understanding the challenges and opportunities in research and engaging all sectors connected and committed to enhancing the quality of life for people. Lovexair are pleased to announce that live translation to Portuguese will be available for all sessions.

Respiriamo Insieme awareness-raising activities

Respiriamo Insieme were in Rome on 1 October for a day of awareness raising and information giving on the prevention of allergic, respiratory and cardiac arrhythmias. It was held in the beautiful setting of Tutti Insieme Park in Rome. The Association provided information on diseases and healthy lifestyles, and free lung, heart and allergy screenings were held. Many outstanding guests entertained the participants bringing cheerfulness throughout the day.