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News
29 April 2024
Europe
COMMUNITY

On 8-9 of April 2024, over 40 representatives of EFA Community of members from 17 European countries convened in Stockholm (Sweden) for EFA’s Annual General Meeting (AGM) and Community Meeting. The AGM was kindly hosted by EFA Members Swedish Asthma and Allergy Association

 

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EFA AGM and Community Meeting 2024  

Marcia Podestà, EFA President, chaired the event and welcomed the EFA Community of allergy, atopic eczema, asthma and chronic obstructive pulmonary disease (COPD) patients leaders. She recognised their efforts at national level for better quality life and thanked them for their commitment to EFA. “We feel proud to have the Swedish Minister for Healthcare, Ms Acko Ankarberg Johansson, and we are grateful for the role that Sweden has been taking in leading the way, developing a new National Allergy Programme following the successful Finnish Allergy Programme. Europe is all about sharing best practices and this is what our Community is here for today,”

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From left to right: Marcia Podestà (EFA President), Susanna Palkonen (EFA Director), Acko Ankarberg Johansson (Swedish Minister for Heathcare) and Mikaela Odemyr (Chair of Astma-och Allergieforbundet)

Our community of patients welcomed the Swedish Minister for Healthcare, Ms Acko Ankarberg Johansson, for an energising and patient-centric keynote speech: "We must never forget that healthcare is ultimately for patients. I often meet patient organisations - you influence policy." In her speech, the Minister praised the work of Astma- och Allergiförbundet, EFA Member from Sweden. EFA is made by strong patient advocates and associations who in the case of Astma- och Allergiförbundet

EFA was grateful to EFA Members hosts Mikaela Odemyr, Chair of Astma-och Allergieforbundet and Cristine Cars Ingels, Secretary General of Riksförbundet HjärtLung for their work towards the wonderful discussions ahead. Mikaela Odemyr from Astma-och Allergieforbundet, stepped on the stage for an announcement, “After decades of advocacy, we finally got a political approval of our allergy programme – an important step forward supported by the Swedish government and Minister Ankarberg Johansson. With the right measures, it is possible to reduce the risk of asthma and allergy and at the same time, ensure better and equal care for those affected. Finland pioneered its allergy programme in 2008, becoming a role model to all of us.”  Mikaela thanked the Minister of health for pushing to develop guidelines and an action plan for Swedish allergy programme.  

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From left to right: Mikaela Odemyr (Chair of Astma-och Allergieforbundet) and Christine Cars Ingels (Secretary of Riskförbundet HjärtLung)

 

EFA Community expands to Malta and Bosnia and Herzegovina and becomes more inclusive

EFA was delighted to welcome two new members to EFA Community at the AGM 2024. Warm welcome to new members and we are looking forward to working together towards better lives of patients with atopic eczema in Europe.  

We are proud to announce that AAA Association BiH (Udruženje pacijenata s alergijama, astmom i atopijskim dermatitisom AAA) from Bosnia and Herzegovina and Malta Eczema Society (MES) have joined EFA Community as new members with a two-year trial period.

AAA Association BIH represents a unique online community of 10,000 patients and advocates for better care, education and research. In the past years, they have been working to strengthen the patient community, represent patients needs and advocate for policies that would improve lives of people living with allergy, asthma and atopic eczema.

Malta Eczema Society is based in the smallest country in the EU where patients often face challenges with timely access to treatments, has been working tirelessly to ensure better care for atopic eczema patients. The society aims to help by providing support, information and practical advice via public talks and other activities and to increase awareness about eczema and the problems it may cause.

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From left tp right: Vildana Mujkic (Bosnian Associetion of Patients with Allergies, Asthma and Atopic Dermatitis), Melissa Zarb (Malta Eczema Society), Susanna Palkonen (EFA Director)

Importantly, the AGM 2024 approved new membership fee criteria to apply from 2025. Instead of having the 500 euro annual membership fee for all and an option for two years trial membership, EFA will start having membership fees between 50 and 500 euro annually, determined according to the income of the members organisations. Such a structure will be more inclusive of organisations with less income to still join EFA Community and be active at European level.

 

EFA 2023 and 2024 activities

In the AGM, EFA Board and team presented to the community the 2023 achievements and accounts, as well as the workplan 2024 proposal for approval. Thanks to the AGM for their guidance and trust in delivering impact for allergy, asthma, and COPD in Europe.

Delivering in partnership

During the discussions, participants discussed best practices on advocacy partnerships in our disease areas, such as the BREATHE 2030 project, a collaboration of nine European level patient groups and medical society on lung health, or the Atopic Eczema Consensus Europe project, which was built with a multidisciplinary group of healthcare professionals on atopic eczema.

 

EFA Community Meeting – Stronger if we are together: partnership for empowerment and leadership

EFA Community Meeting was organised across two days.

The first day focused on the importance of building partnerships beyond the scope of patient organisations.  In 2023, EFA has undertaken a strategic approach on prioritising members’ vision in the development of the EFA community.  Under the theme “Stronger if We Are Together: Partnership for Empowerment and Leadership”, the community meeting was dedicated to discussing partnership in all its diversity. It was also the first meeting ever where EFA partners, including corporate funders were invited to participate alongside EFA members.

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Big thank you to our speakers, panellists and EFA corporate funding partners in attendance the room and online for sharing their valuable insights on the importance of patient perspective in decision-making, research and innovation for better health for all.  

The second day served as a platform for member associations to share knowledge and experiences, discuss challenges and best practices of partnership, and work towards improving patients’ quality of life. More specifically, several EFA Members pitched their national best practices conducted on:

  • Air pollution and smoke-free awareness/advocacy (Cristine Strous, Longfonds) 
  • Guidelines for healthcare at home (Liliya Belenko Gentet, Fédération Française des Associations et Amicales de malades insuffisants ou handicapés Respiratoires FFAIR)
  • Working with corporate partners (Simone Miles, Allergy UK)
  • Collaborating with other patient organisations (Karin Neuhaus, Swedish Asthma and Allergy Association and Špela Novak, Slovenian Atopic Dermatitis Association)
  • Working with promotion and campaign businesses (Niki Malmros, Finnish Allergy and Asthma Association)

EFA member delegates also gathered in structured discussions in disease specific EFA Working Groups: 

  • EFA Allergy and Asthma Working Group 
  • EFA Atopic Eczema Working Group
  • EFA COPD Working Group 
  • EFA Food Allergy Working Group 

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We are looking forward to supporting each other in our daily work - advocating for better lives of people living with allergy and airways diseases and striving for a future where our patients live uncompromised lives, have the right access to high-quality care, participate in care and have a safe environment to lead a better life.  

It has been two wonderful days of building the future of the EFA Community in Stockholm. EFA wishes to thank our hosts Astma-och Allergieforbundet and Riksförbundet HjärtLung from Sweden and to our members and partners for their engagement and trust in EFA’s work.