Catch up on the latest news from patient organisations, as well as their highlights from 2022 and goals for the year ahead.
Patient organisations across Europe rounded off 2022 with a range of impactful events for the lung health community, which you can read about below. For the first round-up of 2023, we also asked patient organisations to share their biggest achievements over the past year and what their hopes and goals are for 2023.
The European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA) has published its new Chronic Rhinosinusitis (CRS) Pocket Guide, a treatment algorithm and diagnostic checklist including questions on suspected comorbid asthma. Designed for use by healthcare providers across all levels, this pocket guide builds further on the success of the EUFOREA pocket guides for adult and paediatric allergic rhinitis.
EUFOREA is also busy planning the second annual Global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness Day due to be held on 20 April 2023.
Download the free EUFOREA CRS Pocket guide: https://bit.ly/3VjuuNh
Learn more about the 2nd Annual Global Chronic Rhinosinusitis with Nasal Polyps Awareness Day: https://bit.ly/3vcOB4Q
The Italian Bronchiectasis Association (AIB-APS) was pleased to have participated for the first time in a congress at the 23rd National Congress of Pneumology in November 2022. It was organised by the Italian Pneumology Society (SIP). AIB-APS attended the event to represent all people with non-cystic fibrosis (CF) bronchiectasis and to build relationships with professionals, associations and companies.
AIB-APS also restarted the Lady Windemere Circle with Professor Francesco Pagnini, a psychologist and member of their scientific committee. These are meetings dedicated to members and aim to build a pathway of psychological support for people living with bronchiectasis.
The new year kicked off with a round-up of videos made by patients sharing positive messages (https://youtu.be/FMvJ90EJ2oo)
AIB-APS has also opened up a phone line (+39 331 227 2147) available every Monday from 17:30 to 19:30 (CET). In 2023, they will also be able receive the so-called 5×1000: a voluntary contribution people can choose to make when they complete their tax return in Italy.
The Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) was represented at two key events:
A leading sectoral magazine-Masters of Medicine-published an extensive interview with the PAHSSc president Mr Kamil Hamidullah. The December issue of NEFES (Breath) was also published. It included doctor interviews, patient stories and new developments in the health arena.
PAHSSc was able to donate two oxygen concentrators this month and celebrated the new year in a Zoom meeting with a quiz where members tried to answer quirky questions and had fun.
Finally, the PAHSSc You Tube channel was watched for 2.7 million minutes – a great new year’s present!
The Global Allergy & Airways Patient Platform (GAAPP) inaugurated the first ever patient organisation corner at the Global Urticaria Forum in Berlin, in December 2022. The space was organised with the support of the Global Allergy and Asthma European Network (GA²LEN). This is a big milestone allowing the patient voice to reach researchers and healthcare professionals working in atopic diseases.
The GAAPP board of directors also met in person in Bangkok, Thailand to discuss strategic plans for the year ahead. During the next year, GAAPP will continue to support their member community to help patients living with asthma, allergies and atopic diseases to live better lives through their efforts in awareness, education, research and advocacy.
Within our second year of operation, we have reached and helped a number of people impacted by lung cancer.
The 2nd FairLife scientific conference in November 2022, entitled “Lung Cancer in the Age of Innovation – the importance of early screening, new therapeutic approaches – A modern approach to molecular testing and clinical studies in Greece” welcomed more than 50 representatives from the scientific and research community in Greece and abroad.
The conference saw an agreement on the necessity of lung cancer screening, including coordinated policy, national guidelines and pilot implementation. Other topics of discussion included the value of innovation, the role of personalised treatment and the development of clinical trials in Greece.
FairLife’s two years of effort alongside lung cancer patients, families and caregivers have been recognised and rewarded by the Hellenic Thoracic Society. This special award was presented for the first time to a patient advocacy organisation at the 31st Panhellenic Pulmonology Conference, held on 9-13 December 2022, with more than 1,000 attendees.
We feel extremely honoured to receive this recognition. To be awarded by the scientific community for contributing to lung health prevention is a moral reward, dedicated to every lung cancer patient in Greece. The distinction comes in addition to 2 gold and 2 bronze awards, already granted in 2022 to FairLife Lung Cancer Care for its initiatives, aimed at information, awareness and prevention.
Other activities for us this year have included:
Paving the way for 2023, we update our actions, talk openly, act to erase lung cancer stigma by preparing the STIGMA campaign and carry on with optimism and hope.
To a world without lung cancer.
It has been a period of great achievements and progress with our community. Our projects and activities have included:
We have also developed the HappyAir digital ecosystem, to provide real solutions to people affected by a respiratory condition, caregivers and healthcare professionals.
Shane Fitch, President of Lovexair Foundation, shared a message about the year ahead: “In this era of great changes, we realise that innovation and discovery together with new technologies, are capable of radically altering how we look after ourselves in our health and wellbeing, especially in the diagnosis, prevention, control and management, from our home or the hospital of the future.
“We are beings connected to our environment, breathing is life and we have a unique biological identity, inherited from our ancestors and influenced by our environment, socio-economic condition, culture, education and lifestyle choices. So how we continue to manage our health and our lives, how we can breathe better, requires us to go on a voyage of discovery. We all want to move forward together, in solidarity, and in a positive way, to be part of the change for the common good.
“This helps us to re-evaluate what our priorities should be, how and who we should work with, on this path forward: better prepared, more responsive and determined to make a difference!”
2022 has been an incredible year for us. We have gone from a support group looking after around 200 patients and carers in Northern Ireland to a registered charity providing support for all the health and social care trusts (hospitals) in Northern Ireland, with around 2000 pulmonary fibrosis (PF), sufferers.
We also achieved our goal in 2022 of purchasing a respite facility (the only one in Ireland), for sufferers of pulmonary fibrosis (PF) and their families to have a break, free of charge.
In 2023, it is our intention to provide a wellbeing package to all patients and carers visiting our respite. There will also be immediate counselling available, including bereavement counselling. It is also hoped that we will be able to start meeting face to face and to arrange group outings.
2023 will also be a year of growth in terms of membership, involvement in clinical trials and support for our members.
We will also be monitoring the benefits from our respite and if required look to purchase another.
Many fundraising activities and awareness events are at the planning stage for 2023, which should once again be very successful.
2022 has been our first full year as a charity and we have achieved more than we hoped. We have a new website and produced leaflets explaining the different forms of aspergillosis. We now have a YouTube channel with short videos with doctors, scientists and physiotherapists. We have also been able to supply a grant for research to a PhD student in Africa.
Aspergillosis Trust is preparing for World Aspergillosis Day which is held annually on 1 February.
We are in the process of making videos, posters, and leaflets for our social media campaign. We will be highlighting the need for better treatments and diagnostics for this rare disease. The WHO recently made Aspergillus Fumigatus a pathogen of concern and we are therefore going to be using the hashtag #beconcerned. Please support us www.aspergillosistrust.org
Our goal for 2023 is to continue to make improvements for the Cystic Fibrosis community in our country. Each year, we have achieved new challenges, such as the newborn heel prick test, the e-Flow and, most recently, the approval of a new cystic fibrosis (CF) treatment for adults and children, which made a big difference in 2022. We are now focused on securing new modulators for the small percentage of people with CF who do not yet have a breakthrough treatment.
If you want to be updated with the latest news, you can visit www.respiralia.org and follow Respiralia on Instagram and Facebook (@respiralia).
Read about CF Europe’s biggest achievements so far in the latest newsletter. You can find out more about this and also plans for 2023 – a year that will mark CF Europe’s 20th anniversary:
