Every year, the EULAR Congress stands as a beacon of knowledge, bringing together over 12,000 delegates, including rheumatologists, healthcare professionals, and patients from all walks of life. This year, I had the privilege of being a part of this grand event in the vibrant city of Milan. As a member of the Lupus Europe Patient Advisory Network (PAN) and a Board Member of CYLPER, my journey at EULAR 2023 was both exhilarating and profoundly meaningful.

 

 

My excitement soared when my abstract was selected for an oral presentation.The abstract highlighted a unique campaign for World Arthritis Day on October 12, 2022, organised successfully by CYLPER. It was an honour to share our achievements and exchange ideas with professionals and patients from around the globe.

A woman speaking in front of a blue and black podium at EULAR 2023. The podium reads "Chryso Kyriakou Yiasoumi"

 

 

Advocating for Lupus Awareness with Lupus Europe:

As a member of the Cyprus League for people with Rheumatism, I have served as the General Secretary for the past five years. Additionally, my affiliation with the Lupus Cyprus group as a volunteer for over 15 years and my role as a PAN member within Lupus Europe have been deeply enriching experiences. Lupus Europe, an umbrella organisation uniting national organisations across Europe for individuals living with Lupus, has become my extended family.

Lupus, an autoimmune rheumatic chronic disease, can affect people of all ages, predominantly women. One of the critical aspects of advocacy work revolves around creating awareness about the seriousness of Lupus, an often “invisible disease.” At EULAR 2023, I had the privilege to engage with stakeholders, politicians, healthcare professionals, and patients. I emphasised the significance of early diagnosis, proper therapy, and effective disease management.

 

Lupus Europe’s Remarkable Initiatives:

 

The Lupus Europe booth at EULAR 2023 in Milan. Background of a big Lupus Europe banner that covers the back of the picture. Three women standing in front of the Lupus Europe booth table. The table has leaflets and Lupus100 books. One of the women is holding Lupus100 leaflets. On the left hand side of the picture is the Congress corridor. On background of the right hand side of the picture is a chair

During the congress, I dedicated several hours volunteering at the Lupus Europe booth,promoting the Lupus100 project. This project is a multilingual website that offers clear answers to the 100 questions most commonly asked by patients about lupus. It offers those answers in over 10 languages and in doing so bridges the information gap for both patients and professionals. Being part of this initiative was not just fulfilling, but crucial in disseminating accurate information about Lupus.

 

 

 

 

The Lupus Europe Patient Advisory Network: A Source of Happiness amid Challenges

Being a PAN member has opened doors to exciting opportunities. Despite the challenges of living with lupus, the support and camaraderie within this group have been invaluable. At the end of each day at EULAR 2023, Lupus Europe PAN members and Board members gathered to discuss our presentations and posters, reflect on our achievements and prepare for the next day. The sense of organisation and unity within Lupus Europe was truly inspiring.

In conclusion, my journey at EULAR 2023 was a testament to the power of collective advocacy and the strength of unity. Lupus Europe’s PAN has provided me with another platform through which to raise my voice, share my experiences, and contribute meaningfully to the lupus community. Together, we are stronger, spreading awareness, and striving for a future where lupus is not just understood but also effectively managed. The journey continues, and I am grateful to be a part of this remarkable endeavour.

 

By Chryso Yiasoumi, Member of the Lupus Europe Patient Advisory Network (PAN),  Board Member of CYLPER (Cyprus League of People with Rheumatism) and its lupus group and Co-Opt to the Lupus Europe Board of Directors.

 

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2 weeks ago

🚨 𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗

📈 In 2020, our "Living with Lupus" survey revealed the significant burden and vast differences in #SLE care across Europe from the patient's perspective.

🔊These findings have become invaluable to lupologists worldwide, shaping how this complex disease is understood and managed.

🎯 The insights from this new survey aim to build on the previous data, helping to refine treatment approaches and care strategies.

‼️ Your participation is crucial in providing a comprehensive view of the current challenges and needs faced by those living with lupus.

✅ The results will not only assist physicians but also inform patients and policymakers, playing a key role in advancing lupus care and advocacy efforts. This is your chance to contribute to a better understanding of lupus and to ensure that care strategies are as effective and tailored as possible.

🕒 Complete this anonymous survey before May 15th and help us capture the diverse experiences of individuals affected by lupus across Europe.

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2 weeks ago

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the "Living with Lupus in 2024" survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Don't miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
... See MoreSee Less

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; its an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the Living with Lupus in 2024 survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Dont miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: https://s.surveylegend.com/-Nr54WsZrcnC-4BwDBrGImage attachmentImage attachment+1Image attachment
2 weeks ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻 Izpolnite anketo.

🔊 Delite z vašo skupnostjo.

🙏 Help us achieve more answers to ensure the Slovak population is represented in the results

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#lupusawarenessmonth
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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