Challenging the status quo in psoriasis care through the ‘Epicensus’ programme

We at EUROPSO are delighted to be partnering with UCB Pharma to challenge the status quo in psoriasis care through the European-wide ‘Epicensus’ programme. This programme aims to reach agreement (consensus) on important issues that limit the standard of care for psoriasis – and drive positive change – allowing you to live your life to the fullest.

Outcomes from the consensus process were published recently in the medical journal Dermatology and Therapy[i]. Jan Koren (President of EUROPSO) represents our psoriasis community as the lead author, ensuring that your views are at the heart of the programme.

About psoriasis

Psoriasis is an inflammatory skin disease caused by a dysfunctional immune system, leading to an overgrowth of skin cells. This can cause visible skin irritation such as raised lesions (plaques) and scales, resulting in itching, burning, and stinging sensations[ii]. Importantly, psoriasis presents both physical and psychological challenges for patients, which can lead to isolation and depression.

Despite advances in the management of psoriasis, there is still room for improving patient care. However, for meaningful improvements to be identified and made reality, it is essential to recognise the views of everyone involved. This multiple stakeholder approach is unique to Epicensus.

What is the Epicensus programme?

The Epicensus programme brings together three important groups of people (stakeholders): dermatologists, payors, and patient representatives (such as EUROPSO), with a focus on improving the standard of care.

How is the Epicensus programme carried out?

First, a questionnaire was sent out to the stakeholder groups to identify current problems in the standard of care for psoriasis. Following this, eight key themes for change were recognised:

  1. Improve healthcare systems to better support multidisciplinary team working and digital services
  2. Optimise real-world data generation and use
  3. Improve patient access
  4. Elevate quality-of-life measures as the most important outcomes
  5. Involve patients in people-centred and personalised approaches to care
  6. Improve the relevance and reach of guidelines
  7. Education
  8. Multistakeholder engagement

Next, a panel of experts representing the different stakeholder groups anonymously took part in a consensus process (Delphi) to reach agreement on statements describing the current problems in psoriasis care, each related to the key themes.

Interestingly, several problems that were revealed were similar to some identified over a decade ago. This highlights that simply recognising what needs to change is not enough to bring about improvements: action must be taken.

Therefore, the panel of experts then met to produce specific ‘Calls to Action’ – practical steps that, if put into practice, should contribute to an improvement in the standard of care for people living with psoriasis.

Raising awareness of psoriasis and Epicensus programme

The outcomes of Epicensus were published in Dermatology and Therapy in December 2022, co-authored by the expert panel that participated in the programme[i].

This paper opens a channel of communication to stakeholders who would not usually work together, to address problems in psoriasis care. Additionally, it helps identify where patients would benefit most from an elevation to the standard of care. It proposes a clear call-to-action framework, which increases the likelihood of real and beneficial change.

The call now goes out to you, the psoriasis community, to help bring about practical improvements in care for patients across Europe.

Read the full paper here*[i] and ask yourself what you can do to help turn the calls to action into a better reality for people living with psoriasis.

*Featuring a plain language summary and visual representations to enhance accessibility and educational value – access these digital features here.


  • Koren J, Lambert JLW, Thomsen SF, et al. Evaluating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative. Dermatol Ther (Heidelb). 2023;13:245–268
  • National Psoriasis Foundation. About psoriasis. Accessed: April 2023.

Uniting Hope and Innovation: The IFPA Forum in Asia 2023 and Its Global Significance for Psoriatic Patients

The second International Federation of Psoriasis Associations (IFPA) Forum in Asia 2023 took place in Singapore beginning of July on the margins of the World Congress of Dermatology. This IFPA Forum was focused on the unmet needs of people living with psoriatic disease in Asia and their solutions. EUROPSO was proudly represented by our President, Jan Koren, two of our Board members, Jaime Melancia from Portugal and Tina Koukopoulou from Greece, along with other individual members.

The Forum was set from the beginning to become a landmark event, bringing together psoriatic patients, medical professionals, researchers, and policymakers from around the world. This biennial gathering, hosted in Asia for the first time, promises to create a platform for shared knowledge, collaboration, and empowerment for the psoriatic patient community. With a focus on hope and innovation, the IFPA Forum 2023 holds immense importance for shaping the future of psoriasis treatment and advocacy worldwide.

Bringing Psoriatic Patients Together

The IFPA Forum serves as a beacon of unity, uniting psoriatic patients from diverse backgrounds and cultures. By fostering a sense of community, attendees find solace in knowing they are not alone in their journey with psoriasis. Patients exchange personal experiences, challenges, and triumphs, while gaining inspiration and motivation to face the condition head-on. To access the IFPA Forum 2023 Briefing Book please click here.

Access to Cutting-Edge Research

One of the central pillars of the IFPA Forum in Asia 2023 is its commitment to disseminating the latest advancements in psoriasis research. Leading dermatologists, researchers, and medical experts present their findings and share insights into emerging treatments and therapies. This invaluable knowledge exchange empowers patients to make informed decisions about their treatment options and provides hope for those seeking relief from the burdens of psoriasis.

Advocacy for Psoriasis Awareness

Beyond its role as a knowledge-sharing platform, the IFPA Forum champions the cause of raising awareness about psoriasis on a global scale. Through symposiums and workshops, participants delve into the various challenges faced by psoriatic patients, including stigma, discrimination, and limited access to healthcare. Armed with newfound knowledge and perspectives, attendees return to their home countries empowered to advocate for improved patient rights and social acceptance.

Pioneering Psoriasis Treatment and Care

The IFPA Forum 2023 fosters a collaborative environment that encourages cross-border cooperation among healthcare professionals and industry stakeholders. This collaborative approach fuels advancements in psoriasis treatment, facilitating the development of novel therapies and patient-centric care models. By embracing a collective commitment to innovation, participants contribute to a brighter future for psoriatic patients worldwide.

Global Impact and Outreach

As Asia takes center stage for the IFPA Forum, its global impact cannot be underestimated. Asia, with its vast population and diverse healthcare systems, presents unique opportunities and challenges in managing psoriasis. By hosting the Forum in Asia, the IFPA expands its reach to regions that may have been underrepresented in previous gatherings, thereby promoting global inclusivity and knowledge sharing.

„The IFPA Forum in Asia 2023 stands as a symbol of hope, unity, and progress for the psoriatic patient community worldwide“ said Jan Koren, EUROPSO President.

By creating an inclusive and collaborative space, this groundbreaking event strives to leave a lasting impact on research, treatment, and advocacy efforts for psoriasis. As patients, healthcare professionals, and advocates come together, they embody the spirit of solidarity, determined to reshape the landscape of psoriasis care and awareness on a global scale.

„The IFPA Forum 2023 is not just an event; it is a catalyst for positive change, forging a path towards a brighter future for all those affected by psoriasis“ concluded Koren.

Featured image credit: IFPA, Twitter

Do You Have Psoriasis? Are You Thinking About Planning a Family? Talk to Your Dermatologist!

Family planning involves preparing for or preventing having children. This means thinking about birth control, fertility and pregnancy. It is important for all women, whether you want a family, do not want a family, or are not sure. As pregnancies are not always planned,1 it is good to know the right information, even if you do not want a family.

Family planning is important for women of childbearing age, particularly for those with psoriasis.1 You may have questions about how your psoriasis could affect your family planning. This could include any impact on your fertility, pregnancy and breastfeeding.

Some women feel they have to choose between pregnancy and taking their psoriasis treatment – they might even stop treatment without speaking with their dermatologist (skin specialist).2 But you do not necessarily need to choose! There are treatments suitable during pregnancy and breastfeeding that can help you control your psoriasis.1,3

Pregnancy is possible in psoriasis!

Psoriasis presents as inflammation of the skin.1,4 Controlling this inflammation is important before and during pregnancy, as it can lead to better outcomes for you and your baby.1,3 Some treatments can transfer to your baby,1 so it is important to understand which treatments are less likely to transfer to your baby during pregnancy or breastfeeding.  

If needed, your dermatologist can help you choose a treatment that is pregnancy-compatible.1,2 It is important to talk to your dermatologist about this early, so they can give you all the information you need to understand the available treatments. Do not worry if you are unsure about your plans for a family, or if your plans change. It is still important to keep talking to your doctor about any possible changes.

Your dermatologist can help you select a treatment that will treat you and not your baby

Experts have written guidelines to help dermatologists give you advice about your psoriasis treatment. These guidelines consider the evidence for treatment use before, during and after pregnancy. They are written for doctors, but they are available to the public if you want to know more.

Together, you and your dermatologist can talk about the best treatment option for you, as well as your fears or concerns around your special journey. Together, you can make a shared decision on the most suitable plan for you and your baby.5

Key points to remember:


  1. Gottlieb AB, Ryan C, Murase JE. Clinical Considerations for the Management of Psoriasis in Women. Int J Womens Dermatol. 2019;5(3):141–150.
  2. De Simone C, Calabrese L, Balato A, Cannavò SP, Dattola A, Esposito M et al. Psoriasis and its management in women of childbearing age: tools to increase awareness in dermatologists and patients. G Ital Dermatol Venereol. 2020;155(4):434–440.
  3. Allen KD, Kiefer MK, Butnariu M, Afzali A. Pregnant Women With Immune Mediated Inflammatory Diseases Who Discontinue Biologics Have Higher Rates of Disease Flare. Arch Gynecol Obstet. 2022;306(6):1929–1937.
  4. Lam M, Steen J, Lu JD and Vender R. The incidence and prevalence of uveitis in psoriasis: a systematic review and meta-analysis. J Cutan Med Surg. 2020;24(6):601–607.
  5. Morrison T, Johnson J, Baghoomian W, Hamilton A, Simpson E, Greiling T et al. Shared Decision-Making in Dermatology: A Scoping Review. JAMA Dermatol.

This article was developed and funded by UCB.

Date of preparation: July 2023


© UCB Biopharma SRL, 2023. All rights reserved.

Doing more than a scratch- Using new technologies to help people with psoriatic disease

The European Federation of Psoriasis movements – EUROPSO organised a panel discussion „Doing more than a scratch- Using new technologies to help people with psoriatic disease“.

The event was held on Thursday, 25 May 2023, from 14:00 to 18:00 in room JDE62 at the European Committee of the Regions. We were able to hear from multiple experts about challenges in the patient journey, current state of psoriatic disease treatment in Europe and importance of further research in this area.

This event was kindly supported by Mr. Ivan Žagar, President of the National Delegation of Slovenia and hosted by the European Committee of Regions.​


Thursday, 25 May 2023, Committee of the Regions, Brussels

14:00 – 14:30    Registration of Participants

14:30 – 14:45    Welcome and Introduction


Representative from the Slovenian CoR Delegation (opening and introduction) Ivan Žagar, President of National Delegation of Slovenia

Jan Koren, President of The Federation of European Psoriasis Association (EUROPSO)

14:45 – 15:05    The EUROPSERVATORY Project: The number of clinical trials is decreasing but the patients’ needs are not


R&D (Clinical trials overview)

David Trigos, Vice President of The Federation of European Psoriasis Association (EUROPSO) (10 minutes)

Soultana Koukopoulou, EUROPSO Board member (10 minutes)

15:05 – 15:25    Treating psoriatic disease Europe: the healthcare professional’s role

Prof. Laura Jane Peckham-Cooper, Speaker from Group for Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) (Topic: Importance of PsO/ PsA research projects) (15 minutes)

Frida Dunger Johnsson, Executive Director, Speaker from the International Federation of Psoriasis Associations (IFPA) (Topic: The importance of advocacy work and policy shaping in psoriasis) (15 minutes)

15:25 – 16:00    Joint proposition for future EU action on psoriatic disease – Action Points from each speaker’s perspective


Key speakers

16:00-16:15       Coffee break outside the Room JDE 62

16:15 – 17:15    Panel Discussion

All participants

Q&A from the audience

17:15 – 17:30    Closing Jan Koren, President of The Federation of European Psoriasis Association (EUROPSO)


(in order of appearance in the Agenda)


President of Slovenian National delegation in the Committee of Regions and Mayor of the Municipality of Slovenska Bistrica

Political group: EPP
Member: ENVE, COTER (First Vice-President
of COTER), CoR Bureau – Vice President,
Enlargement Day, SPO North Macedonia

Photo credit:

Jan Koren

President of EUROPSO

Economist by education, Koren entered the world of patient advocacy first as an activist who wanted to bring positive changes to psoriasis patients in Slovenia. He assumed role of the President of EUROPSO (the European Umbrella Organisation for Psoriasis Movements) in 2016 and has been reelected to that position in 2019 and 2022. Koren is the President of the Psoriasis Association in Slovenia since 2019.

He is driving change in psoriasis care pathway in Europe by leading and/or participating in various patient-centered projects. Koren was part of the leading team in the multi stakeholder Pan-European initiative called “Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus“.

David Trigos Herraez

Vice President of EUROPSO

Born in Oviedo, Spain, in 1979.

Psoriasis patient since 1998 and psoriatic arthritis since 2013, I am involved in patient advocacy since 2012 as a volunteer in different patient organisations.

Since September 2016, vice-president of EUROPSO, European Federation of Psoriasis Organisations, position in which he continues today and  former member of the Board of Directors of IFPA, the World Federation of Patients’ Associations in the period 2019 – 2022.

Since 2015 member of the Spanish National Platform of EUPATI, European Patients Academy on therapeutic Innovation where he has developed different functions in courses, meetings, congresses, until in 2019 became professionally involved as Coordinator of the Spanish platform.

Involved as PRP (Patient research partner) in different research projects at European and global level in the fields of psoriasis and generation of evidence from patient associations, he is also co-author of the European Guide for the systemic treatment of psoriasis vulgaris (Euroguiderm) and of different articles published in different scientific media. 

Since 2017 he has been participating as an Individual expert advisor at EMA (European Medicines Agency) in different advisory processes.

Tina Koukopoulou

Board Member of EUROPSO

Ms Koukopoulou is a Surveyor Engineer, MsS and holds a PhD in Cadastral Systems. She works full time in the public sector, at the Department of Urban Planning in Thessaloniki, in Northern Greece

Tina is a patient diagnosed with psoriasis and psoriatic arthritis. She is been living with the psoriatic disease since she was 16 years old. She is a patients’ advocate and committed campaigner for patients’ rights and raising public awareness about dermatological conditions.

She is a founding member of The Panhellenic Association of Patients with Psoriasis and Psoriatic Arthritis ‘Epidermia’ and served as its first President.  She is currently the Treasurer of the association. Furthermore, she is a member of the Board of Directors of Euro-Pso. Tina serves in both posts voluntarily.

Dr Laura Savage MBChB, BSc(Hons), MRCP (UK), MRCP (Dermatology), PhD

Consultant Dermatologist, Leeds Centre for Dermatology, Chapel Allerton Hospital and Honorary Senior Lecturer, University of Leeds, UK

Dr Laura Savage is a Consultant Medical Dermatologist (Leeds Teaching Hospitals NHS Trust) and Honorary Senior Lecturer (Faculty of Medicine and Health, University of Leeds), where she co-leads the complex psoriatic disease and has extensive experience in utilising targeted immunomodulatory therapies across a number of IMIDs.

Dr Savage’s research interests cross the boundaries of both dermatology and rheumatology and relate primarily to the development of strategies to detect and manage early psoriatic arthritis in patients with psoriasis.

Aside from her role as elected board member (Dermatologist at Large) for the Group for Research in Psoriasis and Psoriatic Arthritis (GRAPPA), Dr Savage is an elected committee member of the British Society of Medical Dermatology, an invited author/member of the EULAR Task Force on Points to Consider for the definition of clinical and imaging features suspicious for progression to psoriatic arthritis, and part of the taskforce currently updating the EULAR recommendations for management of psoriatic arthritis with pharmacological therapies.

Frida Dunger Johnsson

Executive Director of IFPA

Frida is responsible for managing IFPA operations, facilitating strategic development and building global partnerships.

Frida previously served as Secretary General for the non-profit organisation Emmaus Stockholm while serving on the Board of ForumCiv and ActionAid.

Frida holds a Master’s degree in International Development Studies and Cultural Encounters and has previously worked as CEO for a management consultant firm. She has previous experience in business development and sales, as well as in EU-level research regarding health and minority.

Frida is committed to social justice and sustainability, and as Executive Director of IFPA, advocates for millions of people living with psoriatic disease worldwide.


Contact Person: Jelena Misita, Email:
Organizer: Zveza Europso

Study on the Quality of Life for Patients with Psoriasis in Greece

A ground-breaking project co-implemented by ‘Epidermia’

In a trailblazing study- spearheaded by ‘Epidermia’ (Panhellenic Association of Patients with Psoriasis and Psoriatic Arthritis), in collaboration with ‘National and Kapodistrian University of Athens’ and the health economics consulting company ‘Econcare’ – a survey was conducted in March-April 2021 in Greece, to investigate the quality of life of patients with moderate to severe psoriasis and the factors that may influence this. The study looked into the needs of patients, asked whether these are met by the relevant systems of health and social care provision, and identified the gaps, unmet needs and areas for improvement associated with of the quality of life of patients with psoriatic disease.

This study is an optimistic step towards patients’ voices, being part of scientific research approaches to progress the field of treatment and better quality of life.

The results of the study were published in October 2022 in the prestigious ‘Italian Journal of Dermatology and Venerology’ (Edizoni Minerva Medica), entitled Patients’ satisfaction, unmet needs, and treatment benefits in moderate to severe psoriasis in Greece: results from a cross-sectional survey.

The President and the Treasurer of Epidermia (Renos Vamvakousis and Tina Koukopoulou respectively) participated in the formulation of the project and writing the scientific paper, with the cooperation of Georgia Kourlabas and Garifalia Stefanou from Econcare and the esteemed contribution of Professor Ioannis Ifantopoulos, of the National and Kapodistrian University of Athens.

The study involved 380 patients – all members of ‘Epidermia’ of whom 314 have moderate to severe psoriasis.

The article analyzes the profile of the participants (patients with psoriasis), the types of treatment they are undergoing, and the duration of time from the onset of the disease until its correct diagnosis. The study gave a voice to patients to express their needs not only with regard to their treatment for psoriasis, but also with reference to how their condition affects their quality of life and what areas of needs are unmet. These are presented in the article, along with the opinions of the patients about the benefits and their satisfaction with the treatment regimens they follow. In addition, the impact of the disease on the daily life of the participants is recorded as well as the rate of patients’ compliance with their treatment.

 Epidermia is grateful for the fruitful cooperation of all the researchers and scientists involved, and continues to work to have patients’ voices included at all stages of medical research, and treatment for dermatological conditions.

For the complete article, please follow the link here

EUROPSO GPP Workshop 2023

This year’s first EUROPSO GPP Workshop, called “Connecting Psoriasis Clinical Centres of Excellence (CoE) with Patient Organisations (POs) for the Benefit of GPP Patients” will be held virtually, using Zoom platform, on April 26, 2023 at 11am CEST. The official language of the workshop is English and, in addition, we have made available simultaneous interpretation to German and Spanish.

This workshop comes as a sequel, after last year’s first event, held in Amsterdam, under the same topic. Briefly summarised, the main outcomes and outputs from last year were fairly practical. The conclusion was that, if you want to create a community where all people living with GPP are connected to their patient organisation, this should be done in three steps:

  1. Audit POs and CoEs in country/region;
  2. Raise awareness with CoE(s) about the support available from POs for people living with GPP;
  3. Provide POs with GPP patient resources and support tools/services

The main goal of the new workshop would be to achieve multi-stakeholder consensus to realise a psoriasis clinical centre of excellence (CoE) – patient organisation (PO) connection pilot project.

At the workshop, we will be hearing about patient’s perspective and Spanish POs’ success story. We will also hear from the medical professional about the importance of CoE/PO connections
from a medical point of view and what would CoEs need to feel confident
to refer people to patient organisations.

So far, we have members who applied to participate from the Netherlands, Slovenia, Spain, Germany, France, Portugal, Greece and Denmark.

If you are a EUROPSO member organisation and you wish to participate, please send an email to Please be advised that this event is organised for a limited number of invitees, on a first come first served basis.

In case you are not our member but you want to know the outcome of this workshop, stay tuned, as we plan to issue a report in the upcoming weeks.

EUROPSO is thankful to our sponsor, company Boehringer Ingelheim for their generous support that enabled us to organise this workshop.

EUROPSO Young Round Table 2023: The importance of involving young people in advocacy and campaigning

Motivating young patients to exit their comfort zone and become patient advocates

Same as in any other therapeutic area, involving young people in PsO/ PsA advocacy and campaigning is essential to building a more diverse and inclusive movement that reflects the needs and concerns of all stakeholders. By providing opportunities for young people to engage, lead, and learn, we can ensure that the next generation of advocates and leaders is well-prepared to continue the fight for important causes in the future.

As the first step towards empowering future young patient advocates, EUROPSO organised a Young Round Table (YRT) past weekend, on April 1, 2023 in Brussels, Belgium.

Immediately after this workshop meeting, we spoke with Jan Koren, the President of EUROPSO, about models to get young people involved in advocacy and campaigning.

„If I wanted to summarise the most important models for involving young people, I would definitely shortlist it to: Youth Advisory Councils, Peer-to-Peer Advocacy, Youth-Led Campaigns, Mentorship Programs, and, inevitably at these times, Digital Campaigns“ says Koren.

Establishing youth advisory councils would allow young people to provide input and feedback on advocacy and campaigning efforts can help ensure that their voices are heard and their perspectives are valued.

As for the peer support, encouraging young people to advocate for causes they care about within their own peer groups, such as through social media or school-based campaigns, can help build momentum and engagement.

According to Maria Helena Guia, a young patient advocate from Portugal and attendee of EUROPSO’s workshop, “The sharing of people from different countries is very enriching and expands everyone’s vision. Participants were left with lights on how to create an advocacy plan, a tool that could be quite useful. There are young people with a lot of desire to make a difference, but they have to be motivated not to stop. It is important that the organization be more assertive about the expectations of the meetings.”

Empowering young people to take the lead on advocacy and campaigning efforts, such as through youth-led lobbying for policy changes can help build a sense of ownership and investment in the cause. “Mental health and psoriasis, social media or internet in general“ are the subjects another participant of this year’s YRT, Luna Fernandez from Spain would like to see in workshops at the Annual Members Meeting in November this year. According to her, three new key learnings from this workshop are: „1. Very different experiences in different countries; 2. Despite this, very similar preoccupations in us, young patients, and 3) New knowledge in organisation governance.“

Since young people naturally lack life experience, pairing them with experienced advocates and campaigners through mentorship programs can help build skills and provide opportunities for growth and development.

Finally, leveraging digital platforms and tools, such as social media or online petitions, can help young people engage in advocacy and campaigning efforts on a global scale and reach a wider audience.

„We plan to do everything we can, as EUROPSO, to establish these models in the next couple of years. Our first step was to hold this YRT workshop in Brussels last weekend and make basis for establishing a YoungEuropso Committee. However, there are many obstacles that make these aforementioned models hard to realise and addressing these obstacles requires a concerted effort by healthcare organisations, patient advocacy groups, and policymakers to create inclusive and supportive environments that empower young patient advocates to make an impact and advance in their careers“ concluded Koren.

Take control of your GPP

Source: Boehringer Ingelheim

Our long-term partner, company Boehringer Ingelheim has updated and re-released the website GPP&Me just last week. Considering that the website includes many materials with downloadable options, we at EUROPSO thought it would be useful to share with with our psoriasis community. We have tried to put together the highlights from this resource, hoping it would be helpful for you or somebody you care about.

Understanding generalized pustular psoriasis (GPP)

Because GPP is rare, it can take time to find the right doctor. Not all doctors may be familiar with it. And if they recognise it, they still may need to do additional tests to confirm the diagnosis.

Some people may have to see several doctors before GPP is correctly diagnosed. In general, if you have widespread painful, pustules on your skin and have other symptoms like fever, joint pain, and extreme tiredness, you may have GPP.

A dermatologist (skin specialist) is the right doctor to diagnose GPP, but it may take a few visits. A doctor may refer you to another dermatologist who is an expert in GPP.

Once you find the right dermatologist, they may ask about your symptoms, medical history, and any family history of skin disease. They may also need to do blood tests or even look at a small piece of skin under a microscope, called a biopsy, to make the correct diagnosis and decide how best to help you.

Understanding flare triggers may help you manage your disease

A flare is when symptoms appear suddenly

Flares may start with the skin turning red and feeling tender, and then pus-filled blisters (pustules) can appear within hours. The blisters may join together, creating “lakes” of pus. 

Early signs of a flare

Remember how you felt before your last flare? Did your skin turn red and tender with pustules appearing within hours? Did the blisters or pustules combine to form “lakes” of pus? Did you have fever, joint pain, and extreme tiredness?

The next time you feel that way, or the way you felt as a flare occurred, contact your dermatologist right away.

Flares may be unpredictable

Your flares may not always show up the same way and they may appear anywhere on the body. You can’t predict when you may have a flare, or how severe it will be—it can happen any time, last for weeks, and take months to heal. Many patients experience continued symptoms between flares.

Common triggers

Recognising triggers can help manage your disease. Pay attention to how your body feels before a flare. You may have a general feeling of uneasiness, decreased appetite, and nausea before the pustules appear. The most common triggers for GPP flares are:

  • Infection
  • Stress
  • Pregnency
  • Starting or stopping some steroid medicines and pain relievers
  • Withdrawal of steroid treatment
  • Irritating skin creams or ointments
  • Too much sunlight

Helpful tips

If you feel a flare coming on, you may require medical care

Any flare can be serious and may require medical care and, in some cases, lead to hospitalisation. Although rare, complications from a flare can be life-threatening. If you feel a flare coming on, stay calm. Contact your dermatologist when you see or feel the first signs of a flare; they may prescribe a medication. You and your dermatologist may want to discuss the best procedure for ensuring you are seen in a timely fashion when you think you may be having a flare.

Carry information with you that contains your with general practitioner’s and your dermatologist’s contact details

This way, any healthcare provider can check with your dermatologist before treating you. It’s important to get the right treatment as soon as possible for the best results.

Proactively inform all your healthcare providers that you have GPP so they can give you the best care.

Hear from people living with GPP

GPP affects everyone differently. Learn from other people’s experiences with GPP and build your support network.

Visit this link to see other people’s stories and how is their life with GPP.

Featured image:

Why does my psoriasis seem to get worse in winter

Fall and winter bring shorter days. Shorter days mean less sunlight and Vitamin D. At the same time, colder temperatures mean more clothing layers covering your skin. When combined, these factors might bring the worsening of psoriasis symptoms.

In this period of year, we naturally tend to spend more time in closed spaces and due to the heating, the air in these spaces sometimes gets really dry. On the other side, dry wither air in Europe is not exactly favourable for psoriasis either. In fact, the lack of humidity in the air outside and the dry heat in most buildings during fall and winter can have the same undesired effect on your skin- depriving it of the moisture it needs. If you take this into account and combine it with the fact that your body is in this period usually covered from head to toe and not getting enough ultraviolet light, it becomes understandable why your skin is more likely to flare and your plaques worsen in winter.

Keeping skin soft and moist can minimize itching and tenderness. Over-the-counter moisturizers such as petroleum jelly or thick creams may be recommended. These should be applied immediately after bathing or showering.

The dryness-related psoriasis symptoms could also be relieved with the help of air humidifier in the space where you spend the most of your day, be it an office or your home. However, safely getting the ultraviolet light your skin needs might not be that easy. The UV tanning is definitely not an option for various reasons, among which the risk of getting melanoma takes the highest place.

In the attempt to compensate the sunlight, your doctor might recommend medical use of light rays to treat psoriasis. This is known as phototherapy[i]. This therapy comes in a variety of options, and can be done in a doctor’s office, psoriasis clinic, or even in your home.

The form of light known as ultraviolet light B (UVB) seems to be the most beneficial for treating psoriasis. Depending on your symptoms you might be prescribed a certain amount of UVB exposure. If your doctor does choose this form of light therapy for your psoriasis, ask whether you should consider purchasing a home UVB unit.

Holiday season and psoriasis

Winter is also time for holidays. Some people get psoriatic flares around holidays but, contrary to some beliefs, the key triggers[ii] for symptoms are not food and alcohol. The experts have established that the main reason behind  worsening of symptoms for winter holidays lays in stress. It is known that stress is a psoriasis trigger, and there are people who find the holidays very stressful. In addition to that, heavy drinking, smoking and exchanging viruses at social gatherings may also increase the psoriasis symptoms.

What should I do to help myself then?

We have asked Primarius M.Sc Pij Bogomir Marko, MD from Slovenia for an advice.

„All of the previously mentioned reasons might make your life with psoriasis more difficult in wintertime. My first recommendation is- adhere to your therapy. If you are prescribed a medication for psoriasis, make sure that you are compliant and you take your medicine on time. The other advice is- if you feel stressed out, find something that helps you relax. And finally, even though the wither food is delicious and you don’t feel like exercising, try to follow as healthy a lifestyle as possible. Let that be your Christmas present to yourself. “

About psoriasis

Psoriasis is an immune-mediated disease[iii] 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.

Some people report that psoriasis is itchy, burns and stings. Psoriasis is associated with other serious health conditions, such as diabetes, heart disease and depression.

Between 10 and 30% of people with psoriasis develop arthritis, and it can occur at any time, although it is most likely to appear between the ages of 30 and 50. It is not possible to know who will suffer from psoriatic arthritis, as there are no blood tests to predict it. Psoriatic arthritis is a form of chronic inflammation of the joints characterised by redness, swelling and pain in the affected joints.

In addition, there is a rare form of psoriatic disease, called Generalized Pustular Psoriasis (GPP), which is both physically and genetically different from Plaque Psoriasis. Pustules often cover large areas of the body and typically presents with fever, shivers, intense itching, a rapid pulse, fatigue, headache, nausea, muscle weakness, and joint pain. Flares can also cause life-threatening complications, such as a sudden drop in blood pressure.

[i] American Academy of Dermatology Association,

[ii] WebMD,

[iii] National library of medicine, Psoriasis as an Immune-Mediated and Inflammatory Systemic Disease: From Pathophysiology to Novel Therapeutic Approaches,

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.