In 2023, we continued advancing the allergy, atopic eczema, asthma and COPD patients’ agenda through our EFA’s long-lasting projects, the Capacity Building Programme and the Youth Parliament, and two partnership projects, the MEP Interest Group on Allergy and Asthma and the BREATHE Coalition, where we facilitate European-level respiratory organisations exchange, strategic priorities and joint advocacy.
Capacity Building Project
Since 2014, EFA has been running annual capacity building projects to support the development of national allergy, atopic eczema, asthma and COPD patients' groups and organisations. In 2023, EFA offered members activities to strengthen their association in three different areas, aiming to support their evolving needs, sustainable organization growth and improved efficacy of the EFA community.
Sponsored five allergy, asthma, and COPD patients with EUPATI certification
In 2023, EFA sponsored 5 affiliated patients from Austria, Ireland, Serbia, and Spain, including a member of EFA’s Youth Parliament, to complete the European Patients’ Academy on Therapeutic Innovation (EUPATI) Patient Expert Training Programme, while two EFA delegates from Austria and Turkey successfully completed and graduated from EFA’s 2022-2023 capacity building.
EUPATI Patient Expert Training Programme is a certification for patients and patients’ representatives that provides a thorough understanding of the research and development (R&D) process of medicines. Since 2022, EFA is an official EUPATI partner, and we engage in the development of the EUPATI training program, co-designing content, and resources.
EUPATI graduates are like rare gems, coveted by top-tier research and innovation projects. Their unique training equips them to be patient representatives that seamlessly integrate the patient's viewpoint into every aspect of their work. Thanks to EFA’s Capacity Building project and the commitment of patients to the program, EFA disease areas are now represented in the EUPATI Alumni and Patient Experts network, ensuring that EFA’s community is represented in pharmacological R&D, building the excellence of the EFA network, and fostering opportunities for meaningful patient involvement.
EFA delegates Gundula Koblmiller (Austrian Lung Union) and Özlem Ceylan (Turkish Living with Allergy Association) at the EUPATI Patient Expert Training Programme Graduation in Prague (26 October 2023).
“I hope this internationally accepted certificate will open more doors. For example, the participation in international congresses without restrictions, by making a difference between patient advocates and patients.”
“EUPATI does not teach you patient advocacy, but improves your advocacy, and teaches you how patients may engage with industry, decision-makers, regulators, and HTA bodies.”
Facilitated an EFA youth allergy and asthma delegation to the European Youth Event
Focusing on the intersection of digitalization and European healthcare, we engaged participants in lively discussions about the opportunities and hurdles ahead.
The event was chaired by Member of the European Parliament Sirpa Pietikäinen (EPP/Finland) and counted with the participation of allergy and asthma patients from EFA’s Youth Parliament. Joined by approximately 60 other participants at the EYE, youth advocates delved into the intricacies and vulnerabilities of our healthcare systems. Through an interactive Jenga game, we explored the delicate balance between complexity and fragility while envisioning a future where European healthcare is tailored to meet the needs of patients.
The audience was highly engaged with the discussions and five participants who live with allergy and asthma decided to enrol in the Youth Parliament afterwards.
An EFA delegation of 8 members of the Youth Parliament and three EFA staff organised a session at the European Youth Event, in Strasbourg on 9 and 10 June 2023.
Through the Jenga game, participants experienced the trade-offs on the digitalisation of the healthcare system to serve patients’ needs. In the picture, the highest tower that was built at the EFA event, just before it collapsed.
Organisation of the 10th EFA Meet & Greet with the EU training
As an integral component of EFA's 2023 Capacity Building project, we are pleased to organise the forthcoming "Meet & Greet the EU" training session. This session will focus on "Patient Involvement in Clinical Development: Practical Implications for Meaningful Engagement." Our objective is to facilitate patients' access to research and clinical trials while providing the EFA Members community with comprehensive knowledge regarding the new EU guidance on Good Lay Summaries. Scheduled for 2024, this training presents a valuable opportunity for the EFA Community to deepen its understanding of patient engagement in research, remain updated on the latest trends, and acquire practical skills to effectively contribute to the advancement of healthcare initiatives.
European Allergy & Asthma Youth Parliament
In 2023, the EFA Allergy & Asthma Youth Parliament turned four years old! Through the diverse skills and perspectives brought by new and existing members, the Youth Parliament engaged on building knowledge and capacity on key EU policies related to allergy and asthma; engaging in advocacy through new communication channels; as well as further increasing its membership.
The continued enthusiasm and commitment demonstrated by both new and existing members underscore the enduring relevance and impact of the group's mission. Their dedication to exploring and engaging with EU policies on allergy and asthma reflects a genuine passion for advancing healthcare advocacy and awareness.
Youth capacity building
The Youth Parliament is a centrepiece to bring the young patients, young carers, and young medical students to EFA’s advocacy and activities, reinforcing EFA’s community inclusivity and investing in strengthening the skills of the future generation of allergy, asthma and CODP advocates. As such, Youth Parliament members were fully integrated in two EFA projects, Capacity Building and COPD Standards of Care and advise in two EU-funded projects, TOLIFE and 3TR. Moreover, two Youth Parliament representatives participated as observers in EFA’s 2023 Annual General Meeting, where they presented the Capacity Building training organised in Brussels in September 2022.
As part of EFA’s capacity building project, the Youth Parliament hosted and a session during the European Youth Event
EFA Youth Parliament members Eimear O’Rourke (Ireland) and Idoia Morán Fernández (Spain) participated in the Skills Training Course for Young Patient Advocates (STYPA), an annual capacity-building initiative led by the European Patients’ Forum (EPF), which centred around the issue of medicine shortages.
Throughout the four days of training in Riga (Latvia), the Youth Parliament delegates not only gained technical knowledge about shortages and the ongoing revision of EU pharmaceutical legislation but also fostered a sense of community and collaboration. Through engaging discussions and workshops, delegates forged connections with peers who share their passion for healthcare advocacy. This sense of community was further reinforced by the sharing of insights and experiences in a collaborative blog post, amplifying the impact of their learnings beyond the confines of the training room.
Youth allergy and asthma advocacy
The Youth Parliament was vocal in raising their voice in key files for the community. Through a blog, signed by Eimear O’Rourke, they brought the young patient perspective to the negotiations of the EU air quality directives, and to the EP Interest Group on Allergy & Asthma on One Health.
In 2023, the Youth Parliament welcomed five new members, growing the group to 18 young advocates and two more countries represented (Belgium and Greece).
EFA Youth Parliament in 2023
- 18 Members (+5 in 2023)
- 10 Countries represented (+2 in 2023)
- 8 Online meetings, with at least 7 members attending
- All Live with an allergy, atopic eczema, or asthma diagnosis, or are a carer
Facilitator of the Youth Parliament, EFA Senior Policy Advisor Panagiotis Chaslaridis, was featured in the European Parliament Youth Ideas Report 2023 on an interview about the future of the healthcare systems and the perspective of young patients.
"Joining the EFA community gave me a platform to share my experiences with allergies and asthma, and to advocate for those with similar challenges. This was an excellent chance to amplify our voices and effect meaningful change. While involved, I had the remarkable opportunity to speak at the European Parliament in Strasbourg about the potential of digital health to transform healthcare."
EP Interest Group on Allergy & Asthma
During 2023, the EP Interest Group on Allergy & Asthma (IG) continued its work towards better allergy and asthma health in Europe. We brought to the European Parliament a discussion on the ‘Need for an EU one health-in-all policies approach: Addressing the allergy and asthma epidemic’, co-hosted by MEPs Sirpa Pietikäinen (EPP/Finland) and Juozas Olekas (S&D, Lithuania), IG Chair and Vice-Chair, respectively.
The hybrid event brought together a varied audience of policymakers, researchers, healthcare professionals and patients, who highlighted the connection between the changes in flora and biodiversity on health and discussed in detail the impact of bioaerosols such as pollen on allergy and asthma.
The discussion culminated with the launch of a European Joint Statement, urging for a One-Health-in-All-Policies approach to addressing the allergy and asthma epidemic, co-signed by EFA and five scientific organisations. One of the main recommendations of the statement encourages the EU to establish a bioaerosol monitoring network that provides real-time information to citizens. EFA has published a summary report of the event as well as the recording.
The Joint Statement is co-signed by EFA, the European Aerobiology Society (EAS), the European Meteorology Network (EUMETNET), the ADOPT COST-Action, the International Association of Aerobiology (IAA), and the International Society of Biometeorology (ISB).
From left to right, the panel speakers of the event: Athanasios Damialis (Aristotle University of Thessaloniki), Isabella Annesi-Maesano (University of Montpellier/INSERM), Isabel Proaño (EFA), Ingrida Šaulienė (Vilnius University/EAS), Eimear O’Rourke (EFA Allergy & Asthma Youth Parliament), Mikhail Sofiev (Finnish Meteorological Institute), Valeria Ramiconi (EFA), Carsten Ambelas Skjøth (Aarhus University), Alessandra Percuoco (EFA), Vincent-Henri Peuch (Copernicus Atmosphere Monitoring Service).
BREATHE Vision 2030: one voice from lung patients and healthcare professionals!
EFA’s BREATHE project continued strengthening the European Lung Health Group (ELHG), a collaboration between nine European level patient and healthcare professional organisations. EFA is member and facilitator of the group, alongside the European Respiratory Society (ERS), and together we supported the group in getting lung health prioritised at European level. EFA representative in the ELHG is EFA Board Member, Christine Strous.
In 2023, all partner organisations were active within the ELHG, mobilising their own membership and strengthening the collaboration within and across European level advocacy opportunities. After three years of virtual collaboration due to the pandemic, the ELHG met for the first time in person in September in Milan, during the ERS Congress.
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Two lungs, one European lung health voice
In 2023, EFA guided and co-produced several tools for the ELHG to inform European-level legislation and action impacting lung health with one voice. We facilitated eight meetings that helped defined the direction, content, and strategy for each priority for the group. In 2023, the ELHG published five statements and submitted one project proposal for the European Commission Health Programme.
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March 2023 Air quality
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Policy brief ‘Improving lung health in the EU with renewed Air Quality Directives’, |
A call to the co-legislators to ensure the future EU Air Quality Directives are aligned with the latest recommended levels, setting stricter air quality standards to protect lung health. |
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March 2023 Digital health
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Recommendations on the proposal for a European Health Data Space (EHDS) regulation |
Calling the European Parliament to reinforce the role of patients and healthcare professionals’ organisations in the EHDS governance and strengthening digital literacy. |
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October 2023 EU budget for health
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Submission of a project proposal led by ERS/ELF and with participation of EFA to the EUHealth call on the chronic respiratory diseases strand |
Project submission to display and evaluate lung function testing in the European young population. |
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October 2023 Lung health prevention
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Joint statement to the 73rd WHO Regional Committee for Europe on lung health, |
Calling on the WHO Regional Committee for Europe urging for necessary prevention-orientated measures to protect lung health, including improving indoor air quality; addressing climate change-related hazards, such as ambient air pollution, heatwaves, storms, pollen, floods, and wildfires; and tackling the tobacco epidemic. |
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October 2023 Health emergencies This statement was performed during the meeting of the Member States of the WHO Regional Committee. |
Joint statement to the 73rd WHO Regional Committee for Europe health emergencies |
Calling on the WHO Regional Committee for Europe to adopt a future regional strategy and action plan on health emergency preparedness, response, and resilience, that fully integrates lung health and builds synergies with the lung health community. |
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November 2023 Medicines
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Recommendations on the legislative proposal for a pharmaceutical framework |
Calling on relevant Members of the European Parliament from the Health and Environment Committee (ENVI) to maintain the EMA committees that gather patient experts and sustaining patient involvement in EMA through compensation. |
#KeepBreathing campaign: a call for the next European mandate 2024-2029
In 2023 and thanks to EFA’s BREATHE Project, the ELHG defined a new narrative around respiratory diseases focusing on lung health. We launched the #KeepBreathing campaign, an advocacy effort to reduce the fragmentation of knowledge and policies around lung health at the European level. In preparation to the campaign launch, the ELHG developed and adopted a long-term advocacy strategy up to 2029, as well as plans for the reinstatement of the MEP Lung Health Group post 2024 European elections, and narratives to communicate the importance of action on lung health at European level.
The campaign was first presented during the ERS Congress in Milan, where the ELHG launched a #KeepBreathing common identity and a new campaign page, gathering around 300 organic views around the time of the launch. As the campaign kicked-off, the ELHG set up its first joint X @EuroLungHealth, and LinkedIn @European Lung Health Group and YouTube channels.
The ELHG marked World Lung Day on 25 September with a video presenting the campaign and rolled out on X, LinkedIn and YouTube, which gathered +3,300 organic views across platforms. High level policy-makers have been engaging with the call to #KeepBreathing, including WHO Regional Director Hans Kluge, the past European Commissioner for health and Food Safety Vytenis Andriukaitis, or Iana Terleeva, Director of Ukraine National TB Programme.
‘The ERS is supporting the #KeepBreathing campaign because clean air, healthy and tobacco free environment are essential for lung health, and therefore for the benefit of lung diseases patients’.
The ELHG 2023 in numbers
- 9 European level organisations
- 8 Meetings across the year, 1 in person and 1 hybrid meeting
- +14 Participants in average
- +7 Organisations in the meetings
Joint ELHG communication in 2023
Breathevision.eu Website gathered 1,121 visitors and a total of 1,815 organic page views.
@EuroLungHealth: 86 followers and 19,945 impressions
@EuropeanLunghealthGroup: 104 followers and 3,617 impressions
@EuropeanLungHealthGroup: 3 videos, 60 views
Kick off the #KeepBreathing campaign
On @EuroLungHealth account, the #KeepBreathing hashtag has been mentioned 19 times and collected +18,000 views organically, including advocacy on international days such as World Lung Day 2023 (+2,400 views) and World COPD Day (750 views).
On @EuropeanLunghealthGroup account, the #KeepBreathing hashtag was used 6 times collecting 4,050 impressions, 1,500 organic views, 260 engagements and +80 clicks organically.