In the past years, EFA has been vocal in advocating change for all people living with atopic eczema in Europe. One of our most relevant contributions has been the biggest-ever Quality of Life survey on severe atopic eczema, published in 2018, a patient reported outcome measurement that surveyed almost 2,000 patients from 9 European countries. The resulting report “Itching for Life” was a breakthrough piece that sheds light into the life and economic costs encountered by atopic eczema patients.
Despite growing awareness and advancement around skin conditions, the burden atopic eczema patients endure each day is not sufficiently recognised, nor equal. It implies pain, isolation and economic costs that result from the gap in consensus around multidisciplinary care approaches based on needs that could address the impacts patients face in Europe. Awareness around these issues is currently only acknowledged among the atopic eczema community.
The lack of a strong consensus on atopic eczema burden in Europe from the healthcare community leads to a persisting approach to give low priority to atopic eczema as a serious chronic disease. At EFA we seek to change this situation.
Creating a consensus across Europe
In 2021, EFA is running a project to fill the awareness and care gaps and develop a Consensus on the burden of Atopic Eczema/Dermatitis for Patients. Such an endeavour will consist in gathering 15 key opinion leaders from the atopic eczema community (patients, patients’ representatives and multidisciplinary healthcare professionals) to discuss and build common ground on the social burden caused by Atopic Eczema by showing the gaps. These opinion leaders form the Committee which shared expert advice on the challenges faced by atopic eczema patients and potential solutions.
The result of this project will be a report that will serve as a key, regional, advocacy tool for the community patients and healthcare professionals, and stakeholders, to develop the voice and joint position to change patients’ access to quality of care based on the real burden of atopic eczema.
| Members of the Committee of Atopic Eczema Consensus Europe project: | ||||
| Name | Position | Country | ||
| Dr. Elizabeth ANGIER | Clinical Director, Primary Care - West Hampshire Clinical Commissioning Group - University of Southampton | United Kingdom | ||
| Ms. Joana CAMILO | Founding President of the Portuguese Association of Atopic Dermatitis (ADERMAP) and Executive Director of Creating Health | Portugal | ||
| Ms. Ozlem CEYLAN | Founding President of Living with Allergy Association | Turkey | ||
| Prof. Mette SONDERGAARD DELEURAN | Chairman, MD, DMSc, Department of Dermatology - University of Aarhus | Denmark | ||
| Prof. Jan GUTERMUTH | Chairman of the Department of Dermatology & Head Skin Immunology & Immune Tolerance Research Group - University Hospital Brussels | Belgium | ||
| Prof. Swen Malte JOHN | Chairman of the Department of Dermatology, Environmental Medicine - University of Osnabrueck | Germany | ||
| Ms. Tina MESARIC, PhD | PhD, Project leader - Institute Atopika | Slovenia | ||
| Prof. Carle PAUL | Full Professor and former chairman, Department of Dermatology at Larrey Hospital - CHU Toulouse and Paul Sabatier University, Past President European Academy of Dermatology and Venerology | France | ||
| Ms. Sibylle PLANK-HABIBI | Head of Dietitian Team, Department of Dermatology and Allergology - Vital Klinik Alzenau | Germany | ||
| Ms. Gitte RASMUSSEN | Clinical Nurse Specialist, MScN, Department of Dermatology and PhD student - Aarhus University Hospital | Denmark | ||
| Prof. Johannes RING | Professor and former Chairman of the Department of Dermatology and Allergology - Technical University of Munich (TUM) | Germany | ||
| Dr. Esther SERRA BALDRICH | Deputy Physician Head of the Skin Immunoallergic Diseases, Dermatology Service - Hospital de Sant Pau, Barcelona | Spain | ||
| Ms. Snežana ŠUNDIC VARDIC | President of Allergy and Me | Serbia | ||
| Prof. Zsuzsanna SZALAI | Leader of the Department of Peadiatric Dermatology - Heim Pal National Children's Institute Budapest | Hungary | ||
| Prof. Andreas WOLLENBERG | Professor and Head of Conservative and Pediatric Dermatology Unit, Department of Dermatology - Ludwig-Maximilian University, Munich (LMU) | Germany | ||