Patient Organisation Round-up: July 2024

PHA Europe continues to explore their virtual platform for pulmonary hypertension (PH) stakeholders: Bel Air Center. Anyone can register here to access a variety of services. This includes the latest webinar by Health Technology Assessment (HTA) expert Neil Bertelsen. This was the first of three activities related to HTA. Neil introduced HTA and how patient associations can participate in the process.

The webinar recording is now available in the recorded presentation room at Bel Air Center. The next HTA webinar will take place in October 2024.

EUFOREA has recently announced its 4th edition of the Global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness Day on 24 April 2025. The event will take place in Brussels, with the theme ‘New Ambitions of Care.’ Find out more here.

Recently, MNT Mon Poumon Mon Air participated in the scientific meeting of “Fondation Maladies Rares”. This is the first time the organisation has attended the meeting; dedicated to research, new studies and opportunities surrounding rare diseases. The French organisation, dedicated to raising awareness of pulmonary non-tuberculosis mycobacterial (NTM) infections presented 2 posters. These included “The NTM Patient Journey” and “Presentation of the French NTM Organization – MNT Mon Poumon Mon Air”. 

People around the world are puckering up for pulmonary fibrosis. The Canadian Pulmonary Fibrosis Foundation (CPFF) have launched a global #puckerupchallenge aimed at building awareness and empathy for people living with pulmonary fibrosis. Take the #puckerupchallenge and see what it is like to work hard for each breath. 

Cystic Fibrosis Europe recently announced Thierry Nouvel as their latest elected board member and new President. Thierry is well known in the European Cystic Fibrosis (CF) community for his exceptional work as Chief Executive Officer of Vaincre la Mucoviscidose. This organisation was founded in 1965 by parents of young patients and caregivers. It is now the leading private funder of CF research in France. Thierry’s leadership and dedication has been instrumental in advancing CF research and support.  

During June, 2 scientists working within aspergillosis research, Johanna Rhodes and Jennifer Shelton, got together to hold a charity event in memory of dear friend and co-founder, Jill Fairweather.  

On June 20, the longest day of the year, they held an online yoga session, aiming to perform 108 sun salutations. This is a traditional act in some cultures for the summer solstice. Johanna posted a fantastic video, showing her completing the challenge. 

The Aspergillosis Trust is hugely grateful to them both, praising them for their achievements and raising money for the charity. 

The ALK Positive Patient Support and Advisory Group UK (ALK+ UK) has confirmed Professor Ben Solomon from the Peter MacCallum Cancer Centre, Melbourne, as a speaker for their upcoming patient conference.  

Professor Solomon’s pioneering work in the development of Tyrosine Kinase Inhibitors (TKIs) has been instrumental in advancing treatment for ALK+ lung cancer, impacting patient care on a global scale. During his speech, Professor Solomon will share insights into the development of TKIs. This is a unique opportunity to hear from a leader whose research is shaping the future of lung cancer therapy, improving outcomes worldwide. 

The event is scheduled from 27 to 29 September in London. The conference is fully subsidised to cover travel, accommodation, and meals for patients and one companion. Over 100 delegates have already signed up to connect, share experiences, and support one another. This conference is an exceptional chance to learn from leading professionals and be part of a supportive community. 

For those living with bronchiectasis, every day is bronchiectasis day. However, World Bronchiectasis Day on July 1 would not have been possible without the work of a global planning committee of patient ambassadors, professional societies and other experts. The committee is raising global awareness, sharing knowledge and discussing ways to reduce the burden of bronchiectasis for patients and their families worldwide.  

On World Bronchiectasis Day, the Global Allergies and Airways Patient Platform (GAAPP) organized an insightful webinar titled ‘Engaging Patients in Global Bronchiectasis Research.’ During the event, a conversation was held between Dr Michal Shteinberg (M.D., PhD) and patient ambassador, Ninon Farber gave a valuable insight into his journey with bronchiectasis. This event represented the value of patient engagement in research. Read more about bronchiectasis on the GAAPP website here. 

On 1 June, during the European Association of Allergy and Immunology (EAACI) Congress 2024, the results of Respiriamo Insieme’s observational study on Immunotherapy (AIT) were presented. This was in the poster discussion “How, when and why is ITS prescribed in Italy: A ‘Real Life Study Conducted through the Patient Association”. 

This study was recently authorised by the Campania Nord Ethics Committee for Biomedical Experimentation and Research, in April 2023. The Association is very proud of this project and hopes it will help give more evidence to this therapy, which represents a valuable tool at patients’ disposal to change the natural history of allergic disease. 

Find out more here. 

On World Bronchiectasis Day, July 1, volunteers at the Italian Bronchiectasis Association set up information booths in the Policlinico di Milano and Careggi Hospital in Florence to raise awareness of bronchiectasis. In addition, the Italian Bronchiectasis Association have revamped their webpage, which now has an interactive map of outpatient clinics dedicated to bronchiectasis care in Italy. 

Furthermore, the association participated in the Patient Village at the 7th World Bronchiectasis Conference in Dundee, Scotland. On Friday 5 July, President Donatella Nobile, together with Professor Stefano Aliberti, President of the Scientific Committee, launched the project that will lead to the drafting of the white book of bronchiectasis. This is fundamental to raise awareness of conditions, such as bronchiectasis, that have little recognition from institutions. 

In addition to pneumonia, pneumococci can also cause other serious illnesses and can have long-term consequences. After realising there was a gap in knowledge surrounding pneumococcus infection, as shown by market research. Data suggests that less than 20% of people aged over 60 years are vaccinated, and there is too little information regarding the long-term burden of infection and benefit of vaccination. Therefore, the Austrian Lung Union have decided to develop a new information campaign over the summer.  

The campaign consists of a radio spot, press release and social media promotion. The aim of the campaign is mainly to inform people at risk of pneumococcus to talk with their healthcare provider about vaccination. The biggest media channels that Austrian Lung Union will be campaigning over, have already reported about their work, which is unique and recent.  

The German radio spot, which will be on air on several Austrian radio channels until the end of August, can be accessed via the website here. The Austrian Lung Union want to emphasise the importance of becoming vaccinated against pneumococcus.