Last week, the EFA Atopic Eczema patient community brought the lived experience of atopic eczema patients to the European Parliament through an immersive photo and video exhibition. Hosted by MEP Laurent Castillo (EPP*, France), the Atopical Lives exhibition and a cross-party roundtable marked the launch of the European advocacy campaign #BreakTheInvisibleBurden, co-created by EFA and its members. The event gathered MEPs, healthcare professionals, patients, and patient organisations to underline a clear message: atopic eczema is not just a skin rash but a heavy, often invisible burden that demands a holistic policy response to improve access to care, disease management and quality of life.
An immersive exhibition revealing the invisible burden
MEP Castillo opened the exhibition by highlighting the social and financial burdens of atopic eczema and the importance of making patients’ hidden struggles visible. “Atopic Eczema is often there even when we don’t see it. It can cause isolation, bullying, anxiety, depression, poor sleep. It can also be very costly for the family. The photos we see today show the real impact of this pathology. Let’s make this disease visible.” He also pointed to the need for action following the WHA Resolution and stressed the EU’s role in including atopic eczema in its work on NCDs through education, awareness and best‑practice sharing.
EFA Treasurer, Simone Miles, emphasised the importance of integrating the lived patient experience into policy decisions and officially launched the #BreakTheInvisibleBurden campaign. She outlined its three core objectives: addressing mental and social burden, ensuring fair access to multidisciplinary care and treatment, and tackling financial pressures linked to the disease.
Healthcare professionals play a critical role, and EADV President, Prof. Branka Marinović, highlighted the importance of cooperation between dermatologists and patients to achieve meaningful policy change. She underlined the need to improve access to effective therapies, which often remain unevenly accessible across Europe, and called for the EU policymakers to recognise the momentum around skin diseases in public health.
Patients bring their reality to the European Parliament
The most emotional part of the event came when patients from across Europe shared their stories, guided by the exhibition photographer and curator, Lurdes R. Basolí.
Martina Piskar from Slovenia described the deep impact eczema had on her family and daily life: “Atopic eczema steals sleep, work, relationship and dignity”, calling for “A healthcare system that treats patients timely, holistically and compassionately, because when we only treat the skin, we lose the person.”
Hesna Beril Yazici, a young girl from Turkey, shared: “I learned about eczema before I learned to read and write.” She recounted isolation at school when classmates avoided touching her and expressed the relief of finally finding effective treatment.
Paco Rello Salcedo from Spain explained how eczema reshaped daily routines—showers became unbearable; he avoided mirrors and social contact. Now improved, he stressed the psychological toll and the importance of treatment access: “Even if it doesn’t kill you, it can still kill you psychologically, there are high rates of suicide. To avoid these all patients should have access to effective treatments.”
Olga Bekova from the Czech Republic recalled sleepless nights and despair when her son Theo was suffering, while reminding policymakers of the broader atopic journey: even when skin improves, asthma risks can follow.
Jana Zeizingerova, also from the Czech Republic, looked back on years of struggle: “I really want to forget these years because every morning I woke up and had to find the power to continue, both for me and for my children”, but added that treatment transformed her life: “I can sleep through the night and live with fewer fears.”
From France, Marjolaine Hering explained the disease’s influence on life choices and mental health, especially during adolescence. “Dancing was the space where I could breathe and feel myself again.” She emphasised the need for multidisciplinary care: “We need care, dermatologists, psychological care, and help to feel safe in our bodies.”
Testimonials and photos that aimed at showing, as Lurdes explained “the complexity of these lives, the burden, itching, pain, suffering, but also the life of these people in beauty with love, caring for their loved ones, it’s a proposal of getting closer to that universe… a path between burden, resilience, love, care, and touch”.
Turning the WHA resolution into action
The roundtable that followed brought together policymakers to discuss concrete EU actions to reduce the burdens highlighted in the exhibition.
Dr Kingsley Asiedu outlined WHO’s work after the adoption of the landmark WHA resolution on skin diseases as a global public health priority back in May 2025, and laid out ongoing move towards a global action plan, involving a public consultation and extensive collaboration with stakeholders and Member States. He stressed how the resolution will improve data availability through required country reporting on skin diseases.
The roundtable started with a discussion on the current challenges linked to atopic eczema. MEP Castillo cited the mental health impact, the need for treatment access—especially as new effective therapies remain costly—and the importance of research investment.
MEP Tilly Metz (Greens, Luxembourg) added concerns about bullying, stigma, and social exclusion, and highlighted low disease awareness as a major barrier. Finally, MEP Aurelijus Veryga (ECR, Lithuania) shared examples of childhood stigma, noting that many children avoid touching peers with atopic eczema, reinforcing isolation. He emphasised the need for education against stigma and acknowledged the high financial burden of clothing, daily care and medicines.
Regarding next steps, the speakers focused on concrete actions to address the atopic eczema burden. From his side, MEP Castillo pointed to the upcoming EU cardiovascular and mental health plans as opportunities to include atopic eczema and mentioned the importance of the Critical Medicines Act and further funding of research.
MEP Metz underlined giving patients a voice, improving equity, involvement in data collection and research, and using EU tools for NCDs, while she agreed with the need to make EU NCD frameworks fit for AE, starting with the next EU NCD. She also noted the need to improve air quality and implement climate mitigation measures that can benefit atopic eczema patients.
MEP Veryga emphasised digital health solutions, deeper scientific research, better education for healthcare professionals—especially regarding mental health impacts—and tackling unequal access to medicines.
A shared journey ahead
The event marks the beginning of a joint effort within the atopic eczema community to bring patient needs to policymakers at national and EU levels. EFA will continue working with members to advocate for earlier diagnosis, improved treatment access and better quality of life for patients.
EFA extends heartfelt thanks to all members and patients who travelled to Brussels to share their voices. Their presence and testimonials delivered a strong message about the reality of living with atopic eczema and the urgency of concrete policy action.
*Following the week of the exhibition, MEP Castillo was reported to have left the EPP group
EFA extends our sincere thanks to our sustainable corporate partners Sanofi-Regeneron Alliance, Almirall, Pfizer and Incyte for their support through unrestricted grants for our Atopic Eczema Skin Matters project.