Tag Archive for: EPW24

EUROPSO Members Meeting Highlights – November 2024, Frankfurt

/in

The EUROPSO Members Meeting, held on November 16, 2024, in Frankfurt, Germany, brought together patients and patient advocates from the psoriasis community to reflect on 2024’s achievements and strategize for the future.

Key Topics Discussed

1. Reflections and Plans by Jan Koren
EUROPSO President Jan Koren opened the meeting with a comprehensive overview of the organization’s activities in 2024 and outlined plans for 2025, emphasizing the importance of continued collaboration and innovation within the psoriasis community.

2. Health Technology Assessment (HTA) Updates
David Trigos, EUROPSO Vice President, discussed the new EU Health Technology Assessment regulation and its impact on the psoriasis community. Trigos also announced EUROPSO’s new membership in the HTA Stakeholder Network, a significant milestone for the organization. His presentation focused on:

  • Encouraging patient and representative involvement in joint clinical assessments and scientific consultations.
  • Strengthening the role of patients and stakeholders to enhance HTA transparency and quality.
  • Implementing standardized EU-wide methods for HTA processes.

3. Advocacy Campaigns in 2024 and 2025
Tina Koukopoulou reviewed the success of the European Psoriasis Week (EPW) and World Psoriasis Day (WPD) campaigns in May and October 2024. The meeting included a brainstorming session for 2025 campaigns, focusing on equity in treatment access, information, and digital tools.

4. GPP Wellness Project Update
Jelena Misita provided insights into the IFPA-funded project aimed at improving wellness for individuals with Generalized Pustular Psoriasis (GPP). Progress was shared on its three pillars: healthy diet, stress management, and physical exercise.

5. Effective Use of Data for Advocacy
Luisa Avendano, CEO of EFCCA, emphasized the importance of leveraging data for impactful advocacy, while Roberto Saldaña, Strategy Advisor, highlighted how Real-World Evidence can bridge gaps in innovation, stating that, for now, “Innovation does not reach the market… but we don’t even know what we’re missing.”

The meeting ended with a group photo, marking another successful gathering of EUROPSO members. Presentations from the meeting will be distributed to participants by the EUROPSO Secretariat in the coming days.

The event underscored EUROPSO’s commitment to advancing patient advocacy, promoting wellness, and enhancing access to treatment for the psoriasis community across Europe.

Report on European Psoriasis Week 2024

/in

Complete access to treatment across Europe: EUROPSO calls for urgent action on unequal psoriasis healthcare

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, Czech Republic, Portugal, 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

/in

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

/in

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

[

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.

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

/in

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.