EUROPSO General Assembly and Members Meeting

This year’s EUROPSO General Assembly and Members Meeting was special, being the first face-to-face event after a two-year pause, due to Covid-19 pandemic. The event took place on Saturday, November 12, when EUROPSO welcomed to Madrid delegates from Greece, France, Slovenia, The Netherlands, Serbia, Czech Republic and Slovakia, and providing a video link for others who could not join in person.

The General Assembly held Board elections. After the election process was completed, Jan Koren, EUROPSO President announced the new Board, consisting of the following members:

  • Jan Koren – President
  • David Trigos Herraez – Vice president
  • Henk Hulshuizen – Secretary
  • Jaime Melancia – Member
  • Tina Koukopoulou – Member
  • Vanda Marjanović – Substitute member
  • Gabriela Doleželová – Substitute member
EUROPSO Board members present at the Madrid meeting, from left to right: David Trigos, Jan Koren, Tina Koukopoulou, Gabriela Doleželová and Henk Hulshuizen

The main topic of the day was the upcoming launch of the EUROPSERVATORY Project’s first phase in May 2023. Explaining all three project phases, David Trigos, EUROPSO Vice President said the overall goal from the project was having „More clinical research, better access to treatment and raised awareness of the psoriatic patients’ needs, until every approved drug finds its way to the patient in need and stigma around this disease ceases to exist. “

Speaking about this overarching goal, Trigos emphasized that it could not be achieved without inviting other interested organisations for an alignment of activities and achieving better impact on the EU policy makers. The members discussed in details about the idea of having a joint initiative for tackling psoriatic disease, which was later on accepted after a short discussion.

The afternoon sessions were dedicated to three workshops:

  1. Fundraising by using the EUROPSERVATORY project
  2. Awareness & Advocacy
  3. How to get younger people more involved in your organisation

After the meeting ended in late afternoon, the members brought a piece of positive atmosphere back to their national organisations, along with valuable new insights and a plan for EUROPSO 2023 activities.

Welcome to our relaunched EUROPSO newsletter

It is our great pleasure to relaunch our newsletter, on this of all days, since today is the World Psoriasis Day 2022.

The aim of this newsletter is to update you on EUROPSO’s work and to share information on key initiatives that our members are working on. In addition, we will share information from our partner organisations that may be of interest to you.

The newsletter will be sent quarterly and we hope that, in time, this would become your preferred way of getting relevant information from the psoriasis community.

Please let us know what you think and if you have anything you would like us to share in future newsletters, do not hesitate to get in touch. 

You can subscribe by clicking this button below.

Uniting for Action – World Psoriasis Day, 29th October

A call to action by IPFA

Ahead of the fast-approaching World Psoriasis Day 2022, EUROPSO is proudly supporting International Federation of Psoriatic Disease Associations’ (IFPA’s) initiative, with this year’s focus on mental health and mental well-being.

Good mental health and mental well-being are increasingly being recognized as essential parts of health. Depression and anxiety are the most common mental disorders worldwide. Both conditions profoundly impact daily life, relationships, and social interactions.

Research has shown that living with psoriatic disease takes a heavy toll on a person´s mental health and emotional well-being. The non-curable, chronic nature of psoriatic disease, the systemic inflammation occurring in the body, and the fact that the disease is visible on the skin renders people living with psoriatic disease at risk of developing depression and anxiety.

A quarter of people living with psoriatic disease experience depression. And as for anxiety, the number jumps to a staggering 48%. The good news is that timely and proper treatment of both psoriatic disease and depression or anxiety can effectively improve the conditions.

We are united and demand action and together we can make a change for the mental health of people living with psoriatic disease.

• Pledge your support for greater access to psoriatic disease care by supporting IFPA’s online petition.

• Lobby a local or national policy-maker to ensure that all people with psoriatic disease have access to the care they need

• Organize a ‘learn about psoriatic disease’ event in schools

• Help people learn about comorbidities related to psoriatic disease by referring them to IFPA’s online resources

• Engage local celebrities or members of the press for your event to generate some excitement and reach a wider audience

• Organize or participate in a local psoriatic disease awareness event. Check out the global map on psoriasisday.org to pin your activity or search for one to attend

• Light up a local landmark, your home or workplace in orange or purple

• Arrange an activity with your work colleagues

The World Psoriasis Day website houses all the elements of the campaign. You can access and download ready-made assets, but we encourage you to craft your own. Be creative. Be exciting. Be relevant. Tools are available in multiple languages. Find everything at psoriasisday.org.

EUROPSERVATORY Project Launch Announced for May 2023

Jan Koren, President of EUROPSO

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.

European Psoriasis Week 2022

In 2022, the European Psoriasis Week (EPW) is dedicated to raising general awareness of psoriasis, Psoriatic Arthritis (PsA) and Generalized Pustular Psoriasis (GPP), which is both physically and genetically different from Plaque Psoriasis.

Wishing to support our members in spreading the word about our cause, we have created a toolkit with visuals to be used in social media during the #EPW, from 23rd to 29th May. This toolkit was sent to all EUROPSO members, which is currently 21 organisation from 20 European countries.

Given the limitations of the on-going Covid-19 pandemic, we are very appreciative of our members’ work this year and hope to have even bigger EPW movement in the years to come.

World Psoriasis Day – Czech Republic

The Impact of Psoriatic Disease on a Woman’s Career, Family Planning, Social Life and Mental

Summary

A recent survey from IFPA, EUROPSO, and UCB interviewed women from 11 European countries living with moderate-to-severe psoriatic disease.

The findings provide meaningful insight into the experience of women living with psoriatic disease. For example:

  • The impact of psoriatic disease on disease outcomes and quality of life are greater for women than men.
  • The early onset of psoriatic disease results in diagnoses and treatments that typically overlap with a female patient‘s reproductive years and the start of their career.
  • Women with psoriatic disease report greater psychological implications associated with their disease, compared with men.

These findings will help improve holistic treatment and family planning for women living with psoriatic disease.

Read the full article here.

EUROPEAN PSORIASIS WEEK #EPW

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.

PsoProtect and PsoProtectMe Update – January 202

Dear PsoProtect supporter,


We are so grateful for your ongoing contributions to the global psoriasis/COVID-19 registries, PsoProtect and PsoProtectMe. We are delighted to share our latest update – attached and copied below, alongside a plain text version. 
PsoProtect – please continue to report any cases of suspected or confirmed COVID-19 in psoriasis
PsoProtectMe– please encourage your patients to complete the PsoProtectMe survey, whether or not they have had COVID-19

PsoProtect and PsoProtectMe Update – November 2020

Dear PsoProtect supporter,

We are so grateful for your ongoing contributions to the global psoriasis/COVID-19 registries, PsoProtect and PsoProtectMe. We are delighted to share our latest update – attached and copied below, alongside a plain text version. 
PsoProtect – please continue to report any cases of suspected or confirmed COVID-19 in psoriasis
PsoProtectMe– please encourage your patients to complete the PsoProtectMe survey, whether or not they have had COVID-19