EUROPSO appointed as a member of the Health Technology Assessment Stakeholder Network

EUROPSO, the European umbrella organization representing national patient associations for psoriasis, has been appointed to the Health Technology Assessment (HTA) Stakeholder Network.

“This is a significant step forward for psoriasis patient advocacy,” said David Trigos, EUROPSO’s Vice President. He added, “With EUROPSO appointed to the HTA Stakeholder Network, the organization now has a seat at the table where critical decisions about health technologies are made. For patients with psoriasis and related chronic conditions, this is a major win. EUROPSO’s presence means that the voices of millions of people who rely on effective treatments will be directly represented in HTA discussions.”

What is Health Technology Assessment?

Health Technology Assessment (HTA) is a process that evaluates the medical, social, economic, and ethical implications of new or existing health technologies. The term “health technology” covers a broad range, from medicines and medical devices to surgical procedures, diagnostic tests, and even organizational methods in healthcare systems.

The goal of HTA is to assess how beneficial these technologies are for patients, healthcare providers, and policymakers. Through rigorous research, HTA provides insights that help determine whether a health technology should be adopted, reimbursed, or implemented more widely. Essentially, HTA works as a filter to ensure that only effective, safe, and cost-efficient healthcare innovations reach patients.

The new HTA Regulation and what it brings

In January 2022, a new HTA regulation was adopted by the European Union, introducing substantial changes aimed at harmonizing how HTA is conducted across member states. This regulation will fully apply as of January 2025 and is especially crucial because, until now, each EU country had its own approach to HTA, leading to discrepancies in how new technologies were evaluated and approved.

The HTA Regulation brings three major changes:

  1. Joint clinical assessments: Member states are now required to conduct joint clinical assessments for specific health technologies, especially those involving new medicines and high-risk medical devices. This collaborative approach reduces duplication of efforts, leading to faster evaluations and ultimately quicker access for patients.
  2. Unified methodologies and procedures: The new regulation standardizes methodologies across countries. This means that HTA agencies within the EU will follow the same assessment guidelines, ensuring consistent quality in evaluating health technologies.
  3. Greater stakeholder involvement: Patient organizations, healthcare professionals, industry stakeholders, and other relevant groups now have an active voice in the HTA process through the Stakeholder Network. By involving more perspectives, especially from patients who experience the real-world impact of health technologies, the EU aims to make HTA decisions more representative and patient-centered.

EUROPSO’s involvement offers several advantages

EUROPSO can now engage in direct advocacy, sharing real-world patient experiences and emphasizing the importance of quality of life in HTA assessments. This input ensures that patient priorities are considered in evaluating new treatments and interventions.

By participating in the Stakeholder Network, EUROPSO can provide feedback on how HTA processes affect patients, helping to improve procedures and ensure patient-centered care.

Finally, with the streamlined approach of the HTA regulation, EUROPSO’s advocacy can speed up patient access to innovative therapies, especially in areas like psoriasis treatment, where rapid access to effective options is crucial for managing symptoms and improving well-being.

The impact of the new HTA Regulation on patients

The new HTA regulation promises to make healthcare in the EU more inclusive, efficient, and responsive to patients’ needs. By involving patient organizations like EUROPSO, the EU acknowledges that patient voices are essential in evaluating health technologies. This approach can have several positive outcomes such as faster access to treatment, better health outcomes and enhanced trust in health systems.

Featured image by Pete Linforth from Pixabay

World Psoriasis Day 2024: Bridging the gaps in psoriatic disease treatment for families worldwide

Every year on October 29th, the world recognizes World Psoriasis Day—a day dedicated to shining a spotlight on a chronic skin condition that affects 125 million people globally, including six million in Europe. This year, the focus extends beyond individuals to recognize the family’s role in living with psoriatic disease. EUROPSO joins hands with the International Federation of Psoriasis Associations (IFPA) to amplify this year’s theme: “Psoriatic Disease and the Family”, highlighting the profound impact that psoriasis has on the family unit. Today, EUROPSO calls upon healthcare systems, policymakers, and communities to ensure that every individual and their family impacted by psoriasis has access to the necessary care for full, healthy lives.

Psoriatic disease: A family challenge

Psoriasis is often misunderstood as merely a skin issue, but it is far more complex. This autoimmune disease manifests as red, scaly patches and can also cause psoriatic arthritis, leading to painful joint inflammation and mobility limitations. The burden of psoriatic disease goes beyond the physical—it deeply affects mental health, often leading to social isolation, stigma, and reduced self-esteem.

Families play a central role in providing support, but they also experience the challenges associated with the disease. They bear witness to their loved one’s struggle and face the demands of medical care, financial costs, and emotional stress. In some families, children may assist in caregiving or find themselves as advocates, while spouses, parents, and siblings may also experience isolation due to the visibility of the disease. This year, we recognize that psoriatic disease impacts families in profound, interconnected ways, and effective care must be accessible to everyone affected, not just the patient.

Unequal access to psoriasis care around the globe

Despite advancements in psoriatic disease treatment, many still lack access to adequate care. In numerous low- and middle-income countries, specialized dermatology care is scarce or entirely absent, and the high costs of biologic treatments—essential for severe cases—put effective options out of reach. In regions where healthcare costs are high and insurance coverage is limited, the impact is not only felt by individuals but by entire families who may struggle to shoulder these financial and emotional burdens.

This lack of access affects entire communities. Without proper management of the disease, emergency room visits, work absenteeism, and chronic comorbidities increase, which ultimately leads to higher overall healthcare costs. When one member of a family suffers due to limited treatment options, the entire family feels the impact, reinforcing the need for policies that address care accessibility as a family-centered issue.

How families and communities can support each other

Patient organizations worldwide, like EUROPSO and IFPA, have been instrumental in advocating for better care. These organizations provide essential resources that educate the public, reduce stigma, and empower families affected by psoriatic disease to advocate for themselves. Sharing personal stories and experiences with psoriatic disease encourages individuals and families to seek support, and these groups offer educational materials that help dispel common myths about psoriasis.

Yet, awareness alone isn’t enough. Effective advocacy requires tangible support from healthcare systems and global leaders. A comprehensive response to psoriasis care involves investing in research, increasing subsidies for biologics, and expanding access to dermatology services. A global commitment to equitable healthcare is necessary to prevent families from being left behind in this journey.

How you can make a difference for psoriasis patients and families

On this World Psoriasis Day, here are actionable steps that can help bridge gaps in care and alleviate the burdens faced by individuals and families affected by psoriatic disease:

Educate and dispel myths: Psoriasis is not contagious, and it’s not just a cosmetic issue. Educating yourself and others can reduce stigma and lead to more compassionate communities for those impacted by psoriatic disease.

Support patient organizations: Patient groups provide vital support to patients and their families, offering resources that go beyond medical needs. Consider donating, volunteering, or sharing their messages to amplify their impact.

Advocate for change in healthcare policy: Reach out to local policymakers, urging them to prioritize equitable treatment for psoriatic disease and support policies that make advanced therapies more accessible to all, regardless of geographic or economic barriers.

Encourage and listen to patients and families: If you know someone affected by psoriasis, offer them a listening ear. Encourage them to seek treatment options and to connect with support networks. Simple acts of compassion can make a tremendous difference.

Toward a future of accessible care for every family

A world where all families affected by psoriasis have access to effective, affordable treatment is possible. But it requires a united effort—from governments, pharmaceutical companies, healthcare providers, and the broader community. Equitable access to psoriasis care is not just a medical necessity but a human right that can uplift individuals and families alike.

This World Psoriasis Day, let’s unite in our call to bridge gaps in treatment, understanding, and compassion. As we honor the resilience of families impacted by psoriatic disease, let’s pledge to build a future where all families, regardless of socioeconomic status or location, have the resources they need. Together, we can ensure that no family feels alone in their journey with psoriasis and that all those affected can live their lives with dignity and support.

Image by serrano1004 from Pixabay

Tackling gaps in psoriasis care: An imperative for the EU

This article was first published on Euractiv.com

Access to adequate care for psoriasis is inconsistent across Europe and the condition remains misunderstood and undertreated. Only through political will and a shared commitment can we close gaps in psoriasis care.

Bernard Mallee and Brian Lee and Dimitri Pouradier Duteil and Kara Stewart and Scott Canady Bristol Myers Squibb (BMS)  

Access to adequate care for psoriasis is inconsistent across Europe and the condition remains misunderstood and undertreated. Only through political will and a shared commitment can we close gaps in psoriasis care. 

Psoriasis is a condition that is more than skin deep. While often recognised by its most common form, plaque psoriasis, which causes scaly, dry patches on the skin, this chronic autoimmune disease is associated with several serious comorbidities, including psoriatic arthritis, cardiovascular disease, type 2 diabetes, obesity, and mental health disorders like depression and anxiety.  

With at least 100 million people affected worldwide, psoriasis remains under-researched, especially compared to other non-communicable diseases. The condition is more prevalent in high-income countries, where the incidence nearly doubles the global average, with 112.6 cases per 100,000 compared to 57.8 per 100,000 globally.  

However, access to adequate care varies across Europe. To address this, efforts must focus on reducing stigma, improving diagnosis, and expanding understanding and management of comorbidities through better awareness and shared decision-making. 

Addressing the undertreatment of psoriasis 

Although new psoriasis treatments, including new biologics, novel topicals and advanced oral treatments, have become available, many psoriasis patients remain undertreated, largely due to a lack of awareness about the condition. Worryingly, around one in four patients with psoriasis symptoms report not receiving any treatment at all. 

A recent report by Economist Impact, “Beyond skin-deep: tackling gaps in psoriasis care”, commissioned and supported by Bristol Myers Squibb, examined the state of psoriasis care across the UK, France, Italy, Spain, Germany, the US, China and Japan. The findings reveal that knowledge of psoriasis is low and this lack of awareness discourages people from seeking treatment and fuels misconceptions and stigma, with many incorrectly believing the disease is contagious. 

Healthcare providers often lack training to recognize psoriasis and its comorbidities. Primary care providers need to be better equipped to recognize its signs, be able to administer first-line treatments for mild to moderate manifestations, and make referrals to specialist care when appropriate. Improving health literacy and provider education is crucial for better patient outcomes. 

Patient organizations like IFPA and EuroPSO can play a key role in driving public awareness and advocating for access to appropriate care pathways and treatment. Additionally, technologies such as telehealth can expand access to specialized care, especially in rural areas, facilitating timely diagnosis and treatment.  

In Sweden, a national registry for psoriasis patients has been introduced, allowing for more precise tracking of treatment outcomes and enabling healthcare providers to tailor interventions more effectively. However, disparities among countries in tracking psoriasis and its economic impact are significant, particularly where reliable data is lacking, making it harder to assess how the disease affects healthcare systems, economies, patients and providers. 

Former Swedish politician and FOKUS Patient founder, Penilla Gunther, emphasizes the importance of equitable access to optimal care: “We must push forward efforts at the EU and member state levels to ensure every person with psoriasis can live a full and healthy life.” 

Enhancing shared decision-making 

Once a patient is in contact with the health system, the referral pathway to specialist care can be convoluted and complex. Often, there is no singular referral pathway, and the patient’s treatment route varies depending on the clinician they see. Many psoriasis patients express dissatisfaction with their treatment options. This highlights an urgent need for better patient-provider communication and a more patient-centric approach to care.  

Promoting shared decision-making can improve outcomes and satisfaction. Healthcare providers can be trained to engage in meaningful dialogue, listen to patient concerns, and incorporate their preferences into care plans. Tools like decision aids and interactive platforms support these conversations, helping patients understand their options and empowering them to take an active role in decisions on their treatment. 

“Shared decision-making between the patient and their doctor is essential for achieving effective, personalized care,” says Antonio Manfredi, psoriasis patient and advocate for ACCIÓN PSORIASIS. “By prioritizing patient voices and aligning treatment goals, we can see significantly better outcomes.” 

Ilse van Ee, psoriasis patient and advocate for Psoriasispatiënten Nederland, emphasizes: “People living with psoriasis need clear, personalized information about their condition and treatment options. Healthcare providers should start the conversation, allowing patients to weigh the pros and cons based on their preferences. This empowers people to make decisions that truly align with their needs.” 

Understanding the comorbidity burden 

Any psoriasis treatment plan must consider associated comorbidities like psoriatic arthritis, cardiovascular disease, obesity, diabetes, and mental health issues. Focusing solely on skin symptoms risks neglecting broader systemic implications, leading to gaps in care and poorer outcomes. 

Given the systemic nature of the condition, its varying severity and its many comorbidities, a variety of specialists may be needed to provide integrated, multidisciplinary and patient-centred care, based on an individual’s needs.  This holistic approach may include dermatologists, rheumatologists, physiotherapists, mental health specialists, nurses and primary care providers. 

“Addressing psoriasis goes beyond treating skin symptoms; it requires a comprehensive approach that recognizes the significant burden of comorbidities,” explains Tiago Torres, Professor of Dermatology at University of Porto, Porto, Portugal.  

“Best practices should encompass early diagnosis, multidisciplinary care, and access to the latest treatments to reduce the risk of associated conditions like cardiometabolic disease, psoriatic arthritis and depression. Only by closing these gaps in care, can we enhance the quality of life for those affected.”  

Achieving consistent and equitable psoriasis care across the EU is possible with shared commitment and political will. Many member states, such as Spain, Portugal, Sweden and the Netherlands, are already implementing innovative approaches to address gaps in care, offering valuable lessons that can be shared across borders.  

Policymakers across Europe must take action to address the ongoing challenges of psoriasis. Working closely with patient groups, clinicians, and industry leaders, they must improve public understanding of this chronic condition and improve the treatment journey for those affected. 

To ensure better treatment and outcomes, Europe must lead the way in closing these knowledge gaps and addressing inequalities in psoriasis care. 

Join us on 29 October to continue the discussion on addressing the gaps in psoriasis care. Registration page coming soon.

| Image by Eszter Miller from Pixabay

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‘It’s Time for GPP’ – new project by Epidermia for GPP patients

In July 2024, Epidermia, Greece, launched a website entitled ‘It’s Time for GPP’ – an exciting new project aimed at patients with Generalized Pustular Psoriasis (GPP). ‘It’s Time for GPP’ is implemented with the support of IFPA and Boehringer Ingelheim, within the framework of their funding program ‘Project Rare GPP’.

The website is https://timeforgpp.gr/ and the main aim of it is to provide GPP patients with useful advices on wellbeing and coping with daily life.

The website consists of easy-to-use advices for wellbeing while living with GPP, based around a fun and easy-to-use concept of a clock and different daily activities that are usually carried out at particular times of the day. 

The website is attractive and deliberately designed with an optimistic color palette and fun graphics, which are informative, clear and easily understandable. The textual content of the website (advice about wellbeing, nutrition, sleep etc) was written by a psychologist (who has expertise in working with patients with psoriatic disease), following consultation with patients via a focus group. This process not only gave valuable information to the project and enabled the psychologist and designers to produce a site which is useful, applicable and easy to understand for patients, but also supported patient empowerment by including their ideas and opinions at the start of the project, as experts of their own experiences.

Social media posts and leaflets are also being used to promote the site and make it known around the patient community.

 A patient questionnaire will be undertaken after the site has been running for some months to evaluate patients’ experiences of the usefulness of the site.

Report on European Psoriasis Week 2024

During this year’s European Psoriasis Week, EUROPSO, the European Federation of Psoriasis Associations, called attention to the pressing issue of healthcare disparities faced by individuals living with psoriasis across Europe.

EUROPSO member organizations from Greece, Spain, Germany, Slovakia, Slovenia, and Serbia actively participated in this campaign by communicating key messages, translating and disseminating EPW24 materials on their social media platforms, and organizing awareness-raising events in their respective countries. This collective effort significantly contributed to the success of European Psoriasis Week 2024 and highlighted the importance of unified action in addressing psoriasis healthcare disparities across Europe.

Psoriasis, a long-lasting condition characterized by patches of abnormal skin, not only affected physical well-being but also posed significant risks to overall health and life expectancy. Recent studies revealed that individuals with moderate to severe psoriasis had a life expectancy that was, on average, five years shorter than those without the condition. The heightened risk of cardiovascular disease among individuals with psoriasis contributed significantly to this disparity.

Despite the recognition of psoriasis as a risk factor for various comorbidities, including cardiovascular disease and mental health disorders, there remained a concerning lack of visibility of psoriasis within healthcare policies and decision-making processes. This invisibility translated into disparities in market access decisions for psoriasis therapies across Europe.

EUROPSO President Jan Koren emphasized, “Psoriasis needs to be on the radar of policymakers and healthcare leaders. We have to tackle the gaps in treatment and care for people living with psoriasis across Europe. As we work towards the EU Healthier Together Initiative’s goals—reducing early deaths from non-communicable diseases and boosting mental health and well-being—we can’t forget about psoriasis patients.”

Within this year’s campaign, EUROPSO called for collaborative efforts among policymakers, healthcare professionals, and patient advocacy groups to prioritize the needs of individuals living with psoriasis. By promoting equitable access to treatment, raising awareness of comorbidities associated with psoriasis, and advocating for policies that support comprehensive disease management, EUROPSO aimed to improve the quality of life for psoriasis patients across Europe.

Complete Access to Treatment Across Europe: EUROPSO Calls for Addressing Inequities in Psoriasis Healthcare

Brussels, May 29, 2024 – EUROPSO, the European Federation of Psoriasis Associations, is calling attention to the pressing issue of healthcare disparities faced by individuals living with psoriasis across Europe. As part of European Psoriasis Week 2024, EUROPSO emphasizes the critical need for equitable access to treatment and care for those affected by this chronic autoimmune disease.

Psoriasis, a long-lasting condition characterized by patches of abnormal skin, not only affects physical well-being but also poses significant risks to overall health and life expectancy. Recent studies have revealed that individuals with moderate to severe psoriasis have a life expectancy that is, on average, five years shorter than those without the condition [1]. The heightened risk of cardiovascular disease among individuals with psoriasis contributes significantly to this disparity [1].

Despite the recognition of psoriasis as a risk factor for various comorbidities, including cardiovascular disease and mental health disorders, there remains a concerning lack of visibility of psoriasis within healthcare policies and decision-making processes. This invisibility translates into disparities in market access decisions for psoriasis therapies across Europe [2].

A comprehensive analysis of market access decisions in several European countries underscores the inconsistencies and discrepancies in the assessment of psoriasis treatments. Variations in criteria such as appropriate comparator therapy, patient population, and economic data lead to unequal access to therapies, leaving many individuals with limited options for managing their condition [3].

EUROPSO President Jan Koren emphasizes, “Psoriasis should not be invisible to policymakers and healthcare stakeholders. It is imperative that we address the disparities in access to treatment and care for individuals living with psoriasis across Europe. As we strive towards the goals outlined in the EU Healthier Together Initiative, including the reduction of premature mortality from non-communicable diseases and the promotion of mental health and well-being, we must ensure that the needs of psoriasis patients are not overlooked.”

The EU Healthier Together Initiative, launched by the European Commission, aims to support member states in addressing major non-communicable diseases (NCDs) and reducing health inequalities [4]. While the initiative covers various aspects of healthcare, including cardiovascular diseases, diabetes, chronic respiratory diseases, and mental health, EUROPSO emphasizes the importance of incorporating psoriasis into this holistic approach to NCD prevention and care.

EUROPSO calls for collaborative efforts among policymakers, healthcare professionals, and patient advocacy groups to prioritize the needs of individuals living with psoriasis. By promoting equitable access to treatment, raising awareness of comorbidities associated with psoriasis, and advocating for policies that support comprehensive disease management, EUROPSO aims to improve the quality of life for psoriasis patients across Europe.

Media Contact: TBC

References:

  1. MyPsoriasisTeam. (n.d.). Does Psoriasis Affect Life Expectancy? Retrieved from https://www.mypsoriasisteam.com/resources/does-psoriasis-affect-life-expectancy#:~:text=Psoriasis%20is%20not%20a%20fatal,shorter%20than%20people%20without%20psoriasis.
  2. Value in Health. (2017). Disparities in Market Access Decision Making About Available Therapies for Psoriasis Across Europe. Retrieved from https://www.valueinhealthjournal.com/article/S1098-3015(17)30403-5/fulltext
  3. National Center for Biotechnology Information. (n.d.). Psoriasis: A Disease with Plenty of Comorbidities: Introduction. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9196664/
  4. European Commission. (n.d.). EU Non-Communicable Diseases Initiative. Retrieved from https://health.ec.europa.eu/non-communicable-diseases/healthier-together-eu-non-communicable-diseases-initiative_en

About EUROPSO: EUROPSO is the European Federation of Psoriasis Associations, representing the interests of people living with psoriasis and psoriatic arthritis across Europe. EUROPSO works to raise awareness of psoriasis, advocate for improved access to treatment and care, and support research initiatives aimed at advancing the understanding and management of psoriatic diseases.

Complete Access to Treatment Across Europe: EUROPSO Urges Action on Psoriasis Healthcare Disparities

Brussels, May 27, 2024 – As European Psoriasis Week starts today, EUROPSO, the European Federation of Psoriasis Associations, is calling attention to the urgent need for complete access to treatment for individuals living with psoriasis across Europe. Despite the many advancements made in healthcare and the substantial number of therapeutic options available for people living with psoriasis, treatment remains out of reach for many due to systemic barriers.

The EU Healthier Together Initiative, while commendable in its efforts to address major non-communicable diseases, unfortunately overlooked the significant impact of psoriasis on six million Europeans currently living with this condition. This oversight reinforce the necessity for a collective effort to address the gaps in access to treatment for psoriasis patients.

Jan Koren, President of EUROPSO, emphasizes the importance of rectifying these disparities, stating, “Psoriasis affects millions of individuals across Europe, yet access to treatment remains uneven. It is imperative that we bridge these gaps to ensure that every person living with psoriasis has the opportunity to receive the care they deserve, in the country where they live.”

One of the primary challenges in achieving complete access to psoriasis treatment is the shortage of healthcare workers with expertise in dermatological or rheumatological conditions. Additionally, socioeconomic disparities between and within European countries further aggravate the issue, leaving many without access to vital medications and therapies.

Despite these challenges, EUROPSO remains dedicated to advocating for the rights of psoriasis patients. Through initiatives like European Psoriasis Week, the organization aims to raise awareness and mobilize support for policy changes that will improve access to treatment and care for all individuals affected by psoriasis.

This European Psoriasis Week, join EUROPSO in amplifying the message of “Complete Access to Treatment Across Europe. Let’s talk about psoriasis in Europe.” Support our cause by actively participating in EUROPSO’s IEPW24 campaign by sharing educational material, infographics, and videos. Your involvement will directly contribute to giving voice to psoriatic patients and the visibility they need in order to make a positive change. Together, we can work towards a future where every person living with psoriasis has equal access to the care they need and deserve.

For media inquiries or further information, please contact:

Jelena Misita

Patient Advocacy Consultant

Email: jelena.misita@euro-pso.org

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Hashtags

#complete_access_4_all

#let’s_talk_about_access

#let’s_talk_about_pso

#let’s_talk_about_treatment

About EUROPSO

EUROPSO is the European Federation of Psoriasis Associations, dedicated to improving the quality of life for individuals affected by psoriasis and psoriatic arthritis. Through advocacy, awareness campaigns, and support services, EUROPSO works to address the needs of psoriasis patients and promote equitable access to treatment and care across Europe.

Our family’s fight against a mysterious skin disease- my father’s GPP story

Author: Tina Kasap

Going through a rare disease as an individual, and as a family, is a uniquely challenging experience. This is especially true for rare skin diseases, which tend to be taken less seriously and labelled as ‘cosmetic’ issues. I wanted to open up about my family’s journey with Generalized Pustular Psoriasis (GPP), which ultimately took my father from us. It’s been a tough journey filled with confusion, frustration, and a sense of isolation that comes with dealing with such a rare and poorly understood condition.

For over a decade, we watched as my father struggled with a mysterious skin disease. It took over 10 years and several incorrect diagnoses, countless tests, countless hospitalisations and countless ineffective, and at times harmful, treatments to arrive to the GPP diagnosis. The worst part? Even after we had a name for it, the healthcare professionals in charge of his care did not know how to tackle this rare condition, leaving us feeling helpless and alone.

Living through this ordeal was incredibly tough, especially as a family member watching your loved one suffer. We felt like we were on our own because GPP is so rare. It’s hard to describe the sense of isolation that comes with knowing that very few people understand what you’re going through. Losing my parent to GPP has left an unfillable void in my life. But I’m sharing our story in the hope that it will shed light on the challenges of rare diseases like GPP and the critical need for more awareness and support.

Five years after losing my father, I had an unexpected opportunity to engage with the GPP community through my work. A whole new world opened up for me, and I was able to meet other patients and their families, as well as healthcare professionals and advocacy organisations working tirelessly to improve the lives of GPP patients. I finally felt like I was not alone anymore. To anyone out there who’s dealing with GPP or supporting a loved one through it, please know that you are not alone either. Reach out to organizations like EUROPSO—they can connect you with a community that understands. Together, let’s continue advocating for those affected by Generalized Pustular Psoriasis.

Photo by Brittani Burns on Unsplash

The EUROPSO podcast series focused on the Epicensus programme

At the beginning of this year, EUROPSO produced four podcast episodes shedding light on different calls to action from the Epicensus programme, from three perspectives: patients, patient advocates, and medical professionals.

All four episodes are now available for streaming on Spotify and EUROPSO’s YouTube channel.

Despite many improvements in treating and managing psoriasis patients, significant needs still remain unmet. The Epicensus programme brought together three important groups of people: dermatologists, payors, and patient representatives, such as EUROPSO, with a focus on improving the standard of care.

The Epicensus programme achieved consensus across different psoriasis stakeholder groups on the essential changes needed to elevate the standards of care for psoriasis patients across Europe. Collective action is now needed to implement these changes. EUROPSO was proudly represented in this project by Jan Koren, our president.

We partnered with UCB Pharma to challenge the status quo in psoriasis care through the European-wide ‘Epicensus’ programme.

The production of these episodes was financially supported by UCB Biopharma.

To access individual podcast episodes, please click on their title below:

Episode 1: More than skin deep

Episode 2: Education for all

Episode 3: All in this together

Episode 4: Access all areas

European Psoriasis Week 2024: Request for Complete Access to Treatment Across Europe

The European Psoriasis Week, scheduled for the last week of May, starting from May 27, is getting ready to inspire conversations and drive action towards ensuring complete access to treatment for individuals living with psoriasis across Europe. With a targeted focus on people aged 25-45, this year’s campaign aims to leverage the power of social media platforms like Instagram and TikTok to raise awareness and advocate for improved access to psoriasis treatment.

Based on available data provided by IFPA, there are estimated 6 million people in Europe living with psoriasis. Psoriasis, a chronic autoimmune condition that affects millions worldwide, poses significant challenges for those living with it. From the physical discomfort of skin lesions to the psychological toll of stigma and discrimination, the impact of psoriasis can be profound. However, access to effective treatment can make a world of difference, offering relief and improving quality of life for those affected.

The European Psoriasis Week 2024 campaign carries a simple yet powerful message: “Complete Access to Treatment Across Europe. Let’s talk about psoriasis in Europe.” Through engaging content and thought-provoking discussions, the campaign seeks to highlight the importance of ensuring that all individuals have access to the treatment and support they need to manage their condition effectively.

“We believe that every person living with psoriasis in Europe deserves access to comprehensive treatment options,” said Jan Koren, EUROPSO President. “By coming together during European Psoriasis Week, we can amplify our voices and drive meaningful change towards a future with healthier skin and a better quality of life.”

To join the conversation and show your support for complete access to psoriasis treatment across Europe, use the following hashtags on social media: #complete_access_4_all #let’s_talk_about_access #let’s_talk_about_pso #let’s_talk_about_treatment

For more information about psoriasis and the importance of access to treatment, visit Euro-Pso.

Media Contacts

Jelena Misita, Patient Advocacy Consultant at EUROPSO Email: jelena.misita@euro-pso.orgManel Casielles, Communication Officer Email: secretariat@euro-pso.org  

About European Psoriasis Week

European Psoriasis Week is an annual campaign dedicated to raising awareness about psoriasis and advocating for improved access to treatment and support for individuals living with the condition across Europe. By fostering dialogue and collaboration among stakeholders, European Psoriasis Week aims to drive positive change and enhance the quality of life for those affected by psoriasis.