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.

The Psoriatic Association of Slovenia: The 1st congress for psoriatic patients was a great success

Author: Nina Pahor

The Psoriatic Association of Slovenia strives to offer the best to its members and patients with psoriasis.

That is why this year we organised the 1st congress for people with psoriasis, attended by more than 120 patients. The congress was held in a beautiful location on Brdo pri Kranju.

We were joined by top specialists, nurses who are with you in this fight against the disease and accompany you on the path of treatment and improvement. We wanted to provide you with quality and verified information about your illness. The congress was opened by the president of the Society of Psoriatics, Mr. Jan Koren, with an introductory address to all present.

Ms. Nevenka Veboten, a graduate nurse from SB Celje, shared her knowledge and experience with us, who presented us with phototherapy from the side of a nurse. It is impossible to fight psoriasis without local therapy. Mrs. Sandra Bedeković, MD, taught us how to properly apply local therapy and the importance of daily care for skin care. a nurse from the Department of Skin and Venereal Diseases, UKC Maribor.

A healthy lifestyle that includes a healthy diet and physical activity is important for all of us, especially for patients with chronic inflammatory disease. Everything about the guidelines for maintaining a healthy and vital life was presented to us by Mr. asist.dr. Aleš Ambrožič, MD, specialist in internal medicine, specialist of rheumatology from the Clinical Department of Rheumatology, UKC Ljubljana. With the years of knowledge of the disease, the method of treatment also advances. The newest treatment for psoriasis is biological drugs. We were lectured on the goals of psoriasis treatment by prof. Tomaž Lunder, MD, specialist in dermatovenerology from the Dermatological Clinic of the UKC Ljubljana.

Some of you know how psoriasis treatment was done 40 years ago, but many are unaware of how psoriasis treatment has progressed. An insight into the history of psoriasis treatment and progress in treatment was presented to us by Nataša Koser Kolar, MD, specialist in dermatovenerology from SB Celje. Since psoriasis also has associated diseases, we have devoted the topic of the next lecture to one of them. Psoriatic arthritis is an associated disease that occurs in almost 30 percent of people with psoriasis. Katja Perdan Pirkmajer, MD, specialist, lectured us on the importance of treatment and early detection of this disease. of rheumatology from the Clinical Department of Rheumatology, UKC Ljubljana.

Last, but no least important, was the lecture on the psychological side of the disease. The very diagnosis and acceptance of the disease can be a big challenge for both the patient and his family. The burden we get with a diagnosis affects our mental health. And this is exactly what we should devote ourselves to much more. The importance of the psychological side of the disease was presented to us by Ms. Sanja Roškar, MSc in Psychology, Specialist in Clinical Psychology from the Clinic for Internal Medicine, UKC Maribor.

During the break between lectures, we also had a very tasty lunch and stretched our legs around the autumn-colored estate on Brdo pri Kranju. The atmosphere at the congress was very pleasant and we believe that the attendants have acquired some new, important information about the disease and its treatment, which will make patients’ life with it easier.

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.