Patient Organisation Round-up: April 2024

On 3 April, the webinar titled “The great problem of inhalers and asthma” was held. ALERMA participated with their Project Manager, Mrs Úrsula Toro and Dr Isabel Fernández. It turned out to be really educational and awareness-raising as well as enjoyable. The success of the webinar was evident from the number of participants.

It’s been another busy month for the Aspergillosis Trust with Katie Martin, one of the trustees, hosting a psychic night to raise money for the charity. Katie did a talk to over 55 people about aspergillosis and why she has become a trustee for the charity. Her event raised approximately £1000. Katie’s husband, David, and her sister-in-law, Alice, have also got involved. They, along with 3 other runners, took part in the London Landmarks Half Marathon on Sunday 7 April to help raise both awareness and much needed funds. March also saw the completion of 27 out of 30 of the proposed languages translated across 5 of their patient leaflets. Work is now underway to have the leaflets available on the Aspergillosis Trust website.

n 27 March, Respiriamo Insieme took an important step in the fight against respiratory syncytial virus!

The presentation event of the campaign “NON È COME SEMBRA” (“IT IS NOT WHAT IT SEEMS”), held in the magnificent location of the American Studios in Rome, launched the awareness campaign that will continue in the coming months on the Association’s social media aimed at spreading awareness of the importance of knowing and recognising this virus.

There were distinguished institutional and technical-scientific guests from all over Italy. During the launch of Respiriamo Insieme’s campaign, the Director General of Prevention of the Ministry of Health, Francesco Vaia, said, “I am about to sign the ministerial circular for the regions today, to emphasise the actions to prevent the RSV virus, including immunisation. It is essential that in our lives, alongside a healthy diet and sports activity, the “health calendar,” which begins with breastfeeding and continues throughout life, including screening and immunisation, is also included. Prevention, starting with lifestyles, is central and strategic for the Ministry of Health,” heralding the release of the Ministry of Health’s circular regarding prevention measures against RSV.

On 17 April, EUFOREA is heading to the European Parliament to join forces with global leaders in the field of chronic respiratory disease for a EUFOREA symposium on ‘Raising the Bar in Respiratory Care’ hosted by Member of European Parliament, Ms. Dorien Rookmaker, and co-hosted by non-attached Member of European Parliament, Mr.  Mislav Kolakušić. The symposium will address physician and patient perspectives on the current shortcomings in respiratory care (including paediatric perspectives) and the action plan by European experts and advocates including EUFOREA, the Global Alliance against Chronic Respiratory Diseases (GARD), the  European Federation of Allergy and Airways Diseases Patients’​ Associations (EFA), and the Belgian Respiratory Society to address these shortcomings and help curb the epidemic of Chronic Respiratory Diseases (CRDs) in Europe and around the globe.

Patient Empowerment, Self-Management and Patient-Professional Communication are the three themes being targeted in recent information videos released by the Malta Health Network (MHN).  These videos were produced by MHN following a need identified by the Network about raising awareness among patients and public in general of simple concepts which can make a difference to patients in dealing with their conditions as well as professionals when helping patients. It is important to remember that health outcomes will be stronger when you feel that you are being seen and heard. These videos were produced through the Voluntary Organisations Projects scheme managed by the Malta Council for the Voluntary Sector. It was supported by the Ministry for Inclusion and Voluntary Organisations. Additional support was obtained from The Malta Bankers Association, Brown’s Pharma Ltd., Charles Degiorgio Ltd. and Pfizer.

The association MNT Mon Poumon Mon Air participated in a day dedicated to ‘The Patient Experience’ at the Foch hospital in Suresnes. It’s an initiative that puts the patient experience and well-being at the heart of our approach to care and hospitality. A radio station allowed for recording podcasts with some partner associations including MNT Mon Poumon Mon Air. It was a great opportunity to reaffirm the commitment to putting the patient at the centre of the hospital’s concerns.

NTM Info & Research is hosting an NTM and Bronchiectasis Patient Conference on 16–17 May. Patients have the option to participate virtually and in person. Learn from experts in pulmonology, infectious disease, respiratory therapy, lifestyle support and more. The conference will be recorded and available for a limited time afterwards. You must register to have access to the recordings. Learn more about the speakers and the agenda on the registration website.

Pulmonary Fibrosis Northern Ireland are in the process of introducing a children’s book, called Pete the Puffling’s Brave Adventure. This book will beautifully and sensitively raise awareness amongst younger readers. It will also help families when it comes to having the difficult conversation with their children or grandchildren.

Patienten Rat und Treff had a very interesting Rare Disease Day with a wide variety of activities:

• painting nails in different colours.
• an article in the newspaper,
• an interview with a pneumologist in Heerlen, Dr Mostard,
• painting the windows of a local school,
• explanations to young students on rare diseases, and

lighting up a building in Kelmis.

The Brazilian Society of Paediatric Allergy and Immunology has published the guide to microplastics of the Spanish COPD patients association (APEPOC) in Brazilian. The English version will be published shortly. The scientific publication is supported by the Brazilian Scientific Society of Allergy and Immunology (ASBAI). The relationship between the environment, respiratory health and microplastics highlights the importance of addressing plastic pollution from a holistic perspective that considers both human health and ecosystem health.  Growing concern about the ecological consequences of the presence of these materials in different ecosystems led to studies on plastic waste incorporating new concepts and in 2004 the term microplastics (MiP) was introduced.