What is leadership? It is to take initiative, to engage, to put oneself on the line, to lead building on personal and organizational capacity. True leadership is to highlight what really matters and why, and how to create something better. Good leadership takes care that no-one is left behind, that everyone is motivated for the same cause, speak out and give voice to those who do get the power. Excellent leadership is persistent, sees the way to the outcome through all the obstacles and measures achievements, acknowledges everyone who contributes, even in the smallest of ways. The best leadership helps sustain, and build on achievements, to create a permanent, positive cycle of change.
Throughout 2019, EFA launched itself into #ShowLeadership, an overarching campaign on allergy and airways diseases that brought all our patient evidence into light, through monthly highlights, tuned with international awareness days and establishment of the new European institutions. We advocate change for people with allergy and airways diseases and, together with our Members, we engaged others to join us towards that vision.
Our quest for leading champions at European level was especially built around EFA’s brand-new report Active Patients ACCESS Care, a patient reported outcomes survey that showed what matters and what are the gaps on access to care, prevention, patient empowerment and participation in research that patients experience. The report country fact sheets served national advocacy.
At the European level, leadership played an important role in 2019, with a new European Parliament elected in May and a new European Commission taking office in November. With enthusiasm and with evidence, we called in the candidates for the European Parliament elections and then elected Members of the European Parliament (MEPs) to sign up and show leadership to work for our recommendations and Roadmap to Inform, Prevent and Care. Thanks to the 26 policymakers and 49 organizations at European and national level who supported us.
Europe can greatly help to fill the gaps on allergy, asthma and chronic obstructive pulmonary disease (COPD), and national policy makers have a crucial role to play to make it happen. This message was also brought into the European Parliament, where the Interest Group on Allergy and Asthma presented its blueprint on a new direction for allergy and asthma health in Europe, a vision embraced by 12 new and existing MEPs that integrate the Interest Group.
In 2019, it became obvious that while each of us has a story, we all share common patients’ challenges. With the overarching ambition to “look beneath the surface”, this year we also cemented Atopic Eczema Day as a global and annual event, happening each year on September 14th. Through a coordinated communications campaign and with the support of our national members and the Global Skin organisation, Atopic Eczema Day reached more than 1.5 million people alone in Europe and many more worldwide.
In December, the European Commission, MEPs, national food agencies, patients, EFA members and food industry discussed our #FoodDetectives report on quality of life of people with food allergy and the status quo on the implementation and gaps in European food allergen labelling law. The recommendations aim to set the road for better information and care to be adopted by all of them, and the factsheet for food business operators will serve that purpose.
We embarked into two new high end and multi-disease EU research projects to integrate the patient perspective at the core, and help communicate research on atopic eczema (ImmUniverse – H2020) and respiratory disease (3TR-IMI). These projects will hopefully help in unravelling the diseases to improve treatment through personalised, preventative cures.
The year 2019 beard many challenges for EFA. But together with our national members, we could tackle and rise to them. The #ShowLeadership resulted in a roadmap for allergy and airways diseases, a call to action that spells out exactly the policy change needed and how to empower real patients in real life in Europe by informing, preventing and caring, the three pillars that emerged for EFA Strategy 2020-2025.
Sincere, warm thanks to EFA members, EFA sustainable corporate partners, the European Commission, our partner organisations and patient experts for your support and engagement showing leadership throughout the year. The monthly hifghlights build on the story for the need to show leadership to
Join me in 2020 and show leadership to build on the achievements, raise the bar, and most importantly to make sure that we stay on the leadership track for a Europe that prevents, cares and informs, with full participation of patients. Only together is change possible.
Mikaela Odemyr
EFA President