Patient Organisation Round-up: August

Since World Asthma Day in June 2023, the Austrian Lung Union have organised 15 awareness days to test lung fitness. Throughout these, the organisation has offered spirometry testing and highlighted the importance of stopping smoking. The campaign has reached more than 5 million people in Austria so far, with their website increasing this number. 

The Austrian Lung Union are passionate about improving lung health and enabling earlier detection of lung diseases. They are also campaigning for spirometry testing to become a mandatory test during yearly medical check-ups. 

Alongside these activities, the Austrian Lung Union are also implementing a COPD-mobility pass. This will allow people living with COPD and requiring liquid oxygen therapy to refill their portable water bottle in pharmacies and keep up their mobility. 

On 16 June, the general assembly of Alfa-1 Danmark voted for a name change to Alfa-1 Norden and implemented statutes to address the needs of individuals with alpha-1 antitrypsin deficiency throughout Nordic countries. The board looks forward to working together for the welfare of all Nordic Alpha-1 individuals. Read the full press release here. 

Alfa-1 Norden is based in Denmark and will replace the current alpha-1 patient organisations in Denmark and Sweden, also including Norway, which has previously been without a designated alpha-1 patient organisation. 

It is hoped that establishing a joint Nordic alpha-1 organisation will ensure continued existence of a professional patient organisation in the Nordic region, enable sharing of workload and provide improved member services and activities.  

Each year, the Fondation du Souffle organise the Urban Trail de la Butte Monmartre in Paris. This year, the event will take place on 29 September and is a 7km trail, which can be completed by running or walking. The trail will consist of 1200 steps in Montmartre, Paris.  

La Fondation du Souffle supports MNT Mon Poumon Mon Air for this sporting event, which MNT are thankful for. 

There is regular training for members of the organisation and MNT Mon Poumon Mon Air would like to highlight that living with a lung condition does not prevent you from taking part in sports. 

Throughout August, NTM Info & Research have been hosting webinars for people living with non-tuberculosis mycobacterial (NTM) infections and bronchiectasis, or anyone else who is interested in learning about NTM. The webinars are free, and you can find registration links for any upcoming events here. 

World NTM Awareness Day was on 4 August. The day was dedicated to raising awareness of nontuberculous mycobacterial (NTM) infections and advocating for improved care and resources for those affected. NTM lung disease is a chronic lung illness caused by bacteria commonly found in the environment. Symptoms can mimic those of other lung conditions, making diagnosis challenging. 

NTM Info and Research aim to improve outcomes for people living with NTM and improve its education, detection and research. 

World Pneumonia Day is just 3 months away. Every year on 12 November, organisations come together to inform communities about the importance of preventing pneumonia. 

In 2024, NEUMOAI want to make World Pneumonia Day better than ever. They have begun the Pneumolight campaign, which so far has over 276 monuments across 32 countries that will light up blue on World Pneumonia Day. The organisation encourages you to join the Pneumolight campaign. 

Read more about the coordinator of the Pneumolight campaign, Catia Cilloniz, here. 

NEUMOAI also want to announce that Pneumolight will collaborate with the Philippine College of Thoracic Physicians to host the 4th global conference for World Pneumonia Day. This has the support of over 30 organisations and scientific societies worldwide. The links to register for this hybrid event will soon be published and open to everyone.

This year, the webinar will be based around ‘Fighting Pneumonia and Antimicrobial Resistance in Asia’. By raising awareness of this, NEUMOAI want to prevent the spread of pneumonia and save lives. 

The Respiralia Group have recently completed another edition of the Swimming Tour of Formentera. 

The event included 230 people coming together to raise awareness of cystic fibrosis and to raise funds in an edition marked by solidarity. 

Learn more here. 

The Alliance for Pulmonary Hypertension, an international non-profit organisation registered in Belgium, has the mission to share knowledge about pulmonary hypertension (PH). 

Since the series’ official launch one year ago, the organisation has organised 10 live webinars. The webinars have covered topics including:  

• The new PH treatment algorithm; 

• Patient reported outcome measures (PROMs); 

• Pregnancy and family planning with PH;

• Lung and heart transplantation; 

• Pulmonary endarterectomy (PEA) and balloon pulmonary angioplasty (BPA) in PH;

• Congenital heart disease (CHD) and PH in children and adults; 

• Genetics of PH and genetic counselling.  

All these webinars are broadcast on LinkedIn Live, Instagram Live and YouTube to improve accessibility. Recordings, slides and transcripts are made available shortly after each webinar, allowing individuals to review and share the content. The transcripts can be translated directly on the platform via the translation plug-in. 40 languages are now available.  

The Alliance for Pulmonary Hypertension want to say a very big thank you to all the speakers so far! 

The Canadian Pulmonary Fibrosis Foundation is uniting Canadians this autumn to raise awareness of pulmonary fibrosis (PF). 

The organisation will be involved in a range of activities to raise awareness of PF, including country-wide community walks, producing new educational resources and releasing stories to inspire the PF community. 

The Canadian Pulmonary Fibrosis Foundation encourage the PF community to participate throughout August and September. 

The Spanish association of COPD, APEPOC, has recently named Dr Isidoro Rivera as an Honorary Member. 

Since the foundation of APEPOC, Isidoro has been responsible for coordinating the Autonomous Regions and is also the coordinator and patient of Galicia. His commitment to all the causes of APEPOC and constant advocacy for quality and universal primary care is highly remarkable. 

As a family doctor and chronic obstructive pulmonary disease (COPD) patient, he has extensive knowledge surrounding lung conditions and always stresses the importance of patient organisations in his speeches at congresses and meetings. 

As president of the Scientific Society of Primary Care (SEMERGEN Galicia), he has always encouraged the current model of primary care and active participation of patients. Isidoro is currently recovering from various COPD comorbidities, including heart disease and lung cancer, but this has not stopped him from pending all the activities of the association. 

Isidoro’s dedication to improving health for all is inspiring and has contributed to his title as honorary member of APEPOC.  

ALK Positive (ALK+) UK is gearing up for its 3rd UK patient conference in Heathrow, London. The conference will take place from 27 to 29 September. 

Debra Montague, founder and chair, shared insights on what attendees can expect. She highlighted the significance of building friendships at the conference, emphasising how crucial it is for people living with lung conditions and their loved ones to connect with others who understand their journey. This sense of fellowship helps to ease feelings of isolation and provides a supportive environment.  

The conference will feature expert speakers who will share the latest updates and advancements in ALK+ lung cancer. These sessions aim to instil hope and optimism among attendees and promises to leave attendees feeling uplifted, armed with new knowledge and a strengthened support network. 

To ensure accessibility, the conference covers travel, hotel and food expenses for people living with ALK+ lung cancer and a guest. This initiative underscores ALK Positive UK’s commitment to empowering people living with ALK+ lung cancer and fostering a strong community of support. 

Learn more here. 

The Global Allergy and Airways Patient Platform (GAAPP) brought together a bronchiectasis professional and a person living with bronchiectasis to raise awareness of the lung condition. 

Listen to Dr Michal Shteinberg and Ninon Farber, patient ambassador, as they discussed Ninon’s journey through her struggle with bronchiectasis and the value she found by participating in research. 

As a part of the new Respiro Vigilance project, the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA) collaborated with cardiologists to conduct examinations of people living in deprived areas. The examinations included echocardiography, electrocardiography and blood pressure measurement. 

Patients received detailed medical consultations, covering recommendations for treatment and prescription of medications. The lead doctor suggested that adults and children identified as being at risk of developing pulmonary hypertension could find the examinations useful. 

After the event, it became clear that, in addition to earlier diagnoses and increasing availability of drugs, it is important to improve understanding of health. 

Currently, outpatient examinations are importance as not all people living in Ukraine can access the local hospital. The Respiro Vigilance initiative is determined to continue to promote awareness of the importance of disease prevention and maintaining a healthy lifestyle. 

The National Association of Pulmonary Hypertension of Spain (ANHP) launched the campaign “Raise Awareness… We are Pulmonary Hypertension” in honour of the World Pulmonary Hypertension Day. 

On 6 May, the organisation hosted the awareness activity “Feel Pulmonary Hypertension.” Here, participants experienced the reality of people living with pulmonary hypertension by performing daily activities with additional weight to feel the characteristic symptoms.  

Also, on 25 and 26 May, there was a gathering for people living with pulmonary hypertension patients and caregivers. Attendees enjoyed a recreational weekend promoting mutual aid, cohesion, and belonging to the organisation.  

On 27 May, the organisation hosted “Let’s Talk about Pulmonary Hypertension” organized in collaboration with the Heart Failure and Pulmonary Hypertension Unit at Puerta de Hierro University Hospital in Madrid, Spain. The event addressed the current situation of PH and its future perspective regarding challenges in diagnosis and new treatments.  

The objective of ANHP is to educate people about pulmonary hypertension. Improved knowledge can lead to earlier diagnosis, prevent disease progression and improve outcomes.