EADV 2023 – Berlin

This year the global EADV (European Academy of Dermatology & Venereology) conference was organized in Berlin from October 11 – 14, 2023. It was another large conference with more than 600 speakers from more than 50 different countries with a total of 180 sessions and 15,800 participants.

CMTC-OVM was represented by: Laurens Rorive, Naomi Rorive and Lex van der Heijden.

During the EADV conference, patient organizations have been given the opportunity to present themselves. We believe that patient organizations are not visible enough to all the participants, particularly the doctors. In 2022 in Milan (Italy) we were literally placed in the basement. We also felt that the location in Berlin, a short distance from the registration area, was not optimal for us. The presentations were given in a different hall.

Each organization was given a 2-hour time slot with a very small space. Formally, it was not allowed to use banners or paper (leaflets/brochures). No organization took any notice of this rule.

What was noticeable is that, over time, a close bond formed between the various patient organizations. We always take stroopwafels with us and share these. This concept is now also being used by a Danish organization.

Many sessions were medically oriented and often dealt with different syndromes than vascular diseases.

We attended a very interesting parallel session on ‘psychodermatology in clinical practice’ by Prof. Dr. Anthony Bewley. His presentation clearly showed the effect of skin conditions on the patient’s mental health.

1. A total of 98% of patients with a skin condition indicated that it has a major effect on their emotional and psychological well-being.
2. 2.5% of people with a skin condition have suicidal thoughts.

A possible solution is an integrated treatment plan (model for person-centered communication) in which the doctor looks at the medical condition (signs, symptoms and research) and the patient from personal understanding (feelings, ideas, function and expectations).

The effects of a chronic skin condition on a patient’s physical and psychological well-being can impact many areas:

1. Study.
2. Relationships.
3. Social activities.
4. Career.
5. Sex life.
6. Leisure activities.

General psychosocial problems that people with chronic skin conditions face:

1. Low opinion of oneself.
2. Negative image of their body.
3. Social isolation.
4. Impacted sex life.
5. Lower quality of life.

Some aspects of the financial burden:

1. Problems finding work.
2. More likely to experience financial constraints.
3. More likely to be unfit to work.
4. More time absent due to (medical) appointments and illness.
5. Relationship between employer and employee.
6. Increased risk of anxiety and depression.

Dr. Bibi van Montfrans (dermatologist Erasmus Medical Center Rotterdam) and Lex van der Heijden gave a presentation together. The title of this presentation was ‘Solving a challenge together in access to care for vascular malformations’.

The purpose of this presentation was to show the added value of collaboration between doctors and patient organizations. Bibi gave an example of a number of patient ‘cases’ and Lex responded with how we would approach this as a patient organization. The key word here is ‘personal’ from the CMTC-OVM organization. The first step is to make as much personal contact as possible, especially via a video call, not only to get acquainted but also to understand the situation as best as possible and to identify the request for help so that we can provide the best personalized support.

Lex van der Heijden is one of the members of the EADV Patient Advocacy Taskforce. During the meeting of this task force, along with many other patient organizations, it emerged that virtually all organizations are not happy with the location of the Patient Village.

The EADV conference will be organized in Amsterdam in 2024. Lex has been given the role of indicating, along with other patient organizations, how we would like to organize the Patient Village.