Psoriasis has many faces and we need more research to know them all

People with psoriasis often spend the day feeling uncomfortable, embarrassed, itchy and in pain. While lesions may be itchy and painful, there are also psychological effects of psoriasis that can be severe. Other diseases and conditions can be associated with psoriasis and psoriatic arthritis, including diabetes, cardiovascular disease and depression. The latest data even shows that one in two persons with psoriasis has depression. Ahead of this year’s World Psoriasis Day, we talk about the importance of continuous research in this area with Jan Koren, President at EUROPSO European Federation of Psoriasis Associations.

Seemingly, there is already some accumulated knowledge about this disease, so why do you insist on further research in psoriasis?
Yes, there is extensive knowledge on some aspects of psoriatic disease. This knowledge came through research and helped finding different therapy options for people suffering from psoriasis and psoriatic disease. While it seems that we have learned a lot about psoriasis, don’t forget that scientists still do not know what exactly causes this disease. Research is an important piece of the mosaic, without it, we can’t possibly see the whole picture. And what we cannot see, we surely cannot understand or successfully tackle. Having so many different therapies today, comparing to some decades ago seems like a big progress, but the research must continue. Let’s just say that we are not in position to lift our foot from the pedal any time soon.

What is EUROPSO doing on this matter?
As an umbrella organisation, we receive country-specific information through our members from 20 European countries. Although informal and sometimes anecdotal, the information we gathered in previous years made us worry if the number of investigative research projects was decreasing. To be sure about what is the real situation, we initiated, together with EUPATI Spain, a project called EUROPSERVATORY. Just before the pandemic, we started working on this long-term project that will eventually show the complete picture of Psoriasis and Psoriatic Arthritis in Europe. The project is divided in three parts. The first part, dedicated to R&D and Clinical trials is now being finalised and we will soon have a Report, showing the summary of the situation in Europe. I feel privileged to announce the launch of this Report for May 2023. We at EUROPSO are hoping to present the EUROPSERVATORY project findings in the EU Parliament next year, within the European psoriasis week in May 2023.
In addition, this project will implement a service which would offer to our members, psoriasis patients, clinical trials as soon they are approved and included in the EU CT register.
At this point, I feel I also need to express our gratitude to our industry partners, companies BMS, Boehringer Ingelheim and Janssen for their generous support so far, during the first phase of our project.

About Psoriasis and psoriatic arthritis
Psoriasis is an immune-mediated disease that causes raised, red, scaly patches to appear on the skin.
It typically affects the outside of the elbows, knees or scalp, though it can appear on any location. Psoriasis affects at least 15 million people in Europe. It is not contagious.

Psoriatic arthritis (PsA) is a chronic, inflammatory disease of the joints and where tendons and ligaments connect to bone. It can start at any age and some persons develop PsA without ever developing or noticing psoriasis.
There are no special blood tests or tools to diagnose psoriasis. A dermatologist or other healthcare professional usually examines the affected skin and determines if it is psoriasis.
When biopsied, psoriasis skin looks thicker and inflamed when compared to skin with eczema.
Family history plays a big role in psoriatic disease, as about one-third of people with psoriasis have a family member with this disease.

EUROPSO presents European Psoriasis Week as an annual week dedicated to people with psoriasis and/or psoriatic arthritis. This is a new campaing where we want to make more visible psoriatic disease.

Aim of European Psoriasis Week

European Psoriasis Week is dedicated to people living with psoriasis or psoriatic arthritis. During the last week of May, we aim to address their needs:

Raise awareness

Psoriasis affects millions of people around Europe – not just physically, but also socially, emotionally and financially. European Psoriasis Week aims to raise the profile of this debilitating disease and increase awareness of the effect it has on people’s lives.

Spread information

For many, psoriasis is still a relatively unknown disease. On European Psoriasis Week, we spread information about psoriasis, dispel common myths and answer questions. We also inform patients about their own condition, so they can feel empowered to speak about it.

Improve access to treatment

On European Psoriasis Week, we lobby to give people with psoriasis better access to appropriate, affordable treatment. That’s why we specifically address key health decision-makers like national governments, policy-makers and healthcare providers that day.

Give the psoriasis community a voice:

Many people living with psoriasis may struggle to get the world to listen to their needs. European Psoriasis Week is an opportunity for the psoriasis community to speak out from a common platform – and have its voice heard.