We are thrilled to share some exciting news from the recent GlobalSkin ELEVATE Conference in Brussels, where Annemarie Sluijmers, Vice Chair and Secretary of Lupus Europe, was honoured with the prestigious GlobalSkin Patient Leaders Award. The conference, held from June 1 to 4, brought together experts, researchers, and patient advocates from the field of dermatology to discuss and strengthen connections across world regions and disease areas. During this event, Annemarie received the Collaborator Award for her outstanding contributions to the GlobalSkin Europe Community. Let’s take a closer look at Annemarie’s work with GlobalSkin and at how Lupus Europe is making a difference in raising awareness for skin-related issues in Lupus.

 

Group picture of delegates from ELEVATE 2023 ConferenceLupus Europe has been collaborating with the GlobalSkin community, the International Alliance of Dermatologic Patient Organisations (IADPO). IADPO has many members, the majority of whom are patient organisations in Europe. IADPO’s focus is on skin-related conditions, on uniting the voices of European Rare Skin Patients and on advocating for medical dermatology to be prioritised on the European policy agenda.

 

 

 

Photo from GlobalSkin ELEVATE Conference; you can find it: https://www.flickr.com/photos/iadpo/albums 

 

Annemarie Sluijmers plays a pivotal role in this collaboration between Lupus Europe and IADPO. Annemarie is a Vice Chair and Secretary of Lupus Europe and she is also a member of the Advisory Committee of GlobalSkin-Europe. This platform brings  together patient advocates, dermatologists, and policymakers to work towards common goals. Additionally, Annemarie is also a member of the Advisory Committee of RareDERM and the Steering Committee of the World Skin Health Coalition.

 

Highlights from the ELEVATE Conference:

 

  • The ELEVATE 2023 conference offered valuable insights into various aspects of dermatology, research, and advocacy. Here are some key takeaways:

 

  • The Importance of Data: Experts emphasised the significance of global data for (rare) skin diseases, requiring unique codes compatible with different IT systems.

 

4-four-things-change-dermatology

    Photo from GlobalSkin ELEVATE Conference; you can find it: https://www.flickr.com/photos/iadpo/albums 

  • AI and Non-Invasive Imaging: AI technology has potential applications beyond primary care skin cancer, offering non-invasive imaging for various dermatological conditions.

 

  • LC-OCT: Line-field confocal optical coherence could be a promising alternative to skin biopsies.

 

  • Personalised Medicine: The conference highlighted the importance of personalised medicine, including the sterilisation and re-use of single-use instruments and using medications beyond their expiration date.

 

Recognising Outstanding Contributions:

During the ELEVATE Conference, Lupus Europe’s very own Annemarie Sluijmers received the Collaborator Award for her dedication to the GlobalSkin Europe Community.

Photo of Annemarie Sluijmers receiving the Collaborate award during the ELEVATE 2023 Conference

 

 

 

 

 

 

 

 

    Photo from GlobalSkin ELEVATE Conference; you can find it:

https://www.flickr.com/photos/iadpo/albums 

 

This was said about her: “Annemarie is Board Member of Lupus Europe. She is a devoted patient advocate and a committed supporter of the GlobalSkin Europe activities. She consistently provides insights and share ideas, precious for the whole community. I must also stress that she is a diligent Eupati fellow. Annemarie is very active not only at the national, but also at the European level.

 

 

GRIDD Study: 

 

If you have skin lupus or involvement of the skin while having SLE, do participate in the GRIDD study survey. You can find the GRIDD study survey at the following link: https://www.my.crf.one/en/Public/RegisterSurvey/279e953a-b9be-4b2c-9b5c-f1e32a25bb59

 

Your input will contribute to furthering the understanding of these conditions and their true impact. Collaboration and data play crucial roles in improving the lives of those affected by skin diseases

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12 hours ago

🌟 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬 𝐨𝐟 𝐭𝐡𝐞 𝐬𝐞𝐜𝐨𝐧𝐝 𝐝𝐚𝐲 𝐨𝐟 𝐭𝐡𝐞 #𝐋𝐮𝐩𝐮𝐬𝐀𝐜𝐚𝐝𝐞𝐦𝐲𝟐𝟎𝟐𝟒 𝐌𝐞𝐞𝐭𝐢𝐧𝐠❗

🤩 What an incredible day with insightful sessions and important discussions about #SLE!

💫 𝐖𝐞 𝐚𝐫𝐞 𝐢𝐧𝐜𝐫𝐞𝐝𝐢𝐛𝐥𝐲 𝐩𝐫𝐨𝐮𝐝 𝐨𝐟 𝐭𝐨𝐝𝐚𝐲'𝐬 𝐰𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐥𝐞𝐝 𝐛𝐲 𝐨𝐮𝐫 𝐂𝐡𝐚𝐢𝐫, 𝐉𝐞𝐚𝐧𝐞𝐭𝐭𝐞, 𝐚𝐥𝐨𝐧𝐠𝐬𝐢𝐝𝐞 𝐏𝐫𝐨𝐟. 𝐀𝐫𝐧𝐚𝐮𝐝 𝐚𝐧𝐝 𝐃𝐚𝐥𝐢𝐥𝐚, 𝐨𝐧 𝐢𝐧𝐜𝐨𝐫𝐩𝐨𝐫𝐚𝐭𝐢𝐧𝐠 𝐭𝐡𝐞 𝐩𝐚𝐭𝐢𝐞𝐧𝐭’𝐬 𝐩𝐞𝐫𝐬𝐩𝐞𝐜𝐭𝐢𝐯𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐦𝐚𝐧𝐚𝐠𝐞𝐦𝐞𝐧𝐭❗

Stay tuned for tomorrow, where we'll dive deeper into the insights shared!

📝 Here's a recap of the key moments:

🫀 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐜𝐚𝐫𝐝𝐢𝐨𝐯𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐚𝐧𝐝 𝐥𝐮𝐧𝐠 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 #𝐥𝐮𝐩𝐮𝐬
Dr. Bernardo Pons-Estel and Dr. Anisur Rahman tackled the complexities of managing heart and lung complications in #SLE, emphasising early detection and intervention to reduce risk.

🩸 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐡𝐚𝐞𝐦𝐚𝐭𝐨𝐥𝐨𝐠𝐢𝐜𝐚𝐥 𝐩𝐫𝐨𝐛𝐥𝐞𝐦𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
Dr Ricard Cervera and Dr Raquel Faria discussed the importance of addressing haematological issues in lupus, including anaemia and thrombocytopenia.

🌍 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐬𝐤𝐢𝐧 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
Dr Andrea Doria and Dr Annegret Kuhn highlighted the challenges of treating lupus skin involvement, stressing the role of dermatologists in multidisciplinary care.

🤰 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐩𝐫𝐞𝐠𝐧𝐚𝐧𝐜𝐲 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
Dr Sandra Navarra and Dr Irene Bultink covered the delicate balance of managing lupus during pregnancy, with an emphasis on preconception counselling and close monitoring throughout gestation.

💉 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐛𝐢𝐨𝐥𝐨𝐠𝐢𝐜𝐬/𝐭𝐚𝐫𝐠𝐞𝐭𝐞𝐝 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐧𝐞𝐩𝐡𝐫𝐢𝐭𝐢𝐬
Dr. Maria Dall’Era and Dr. Alexandre Voskuyl presented the latest advancements in biologics and targeted therapies, focusing on personalised treatments for lupus nephritis.

🔬 𝐍𝐨𝐯𝐞𝐥 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬
The afternoon covered novel therapies, including CAR-T cell therapy, where Dr Ronald van Vollenhoven and Dr Richard Furie addressed the potential and limitations of these emerging treatments for lupus. While CAR-T holds promise, it's crucial to manage expectations.

🫀 𝐇𝐞𝐚𝐫𝐭, 𝐛𝐨𝐧𝐞𝐬, 𝐚𝐧𝐝 𝐞𝐲𝐞𝐬
The session on cardiac diseases by Dr Wouter Kok, lupus and bone health by Dr Judith Bubbear, and lupus and the eyes by Dr Joeri de Hoog provided invaluable insights into managing organ-specific complications in lupus patients. Early detection and multidisciplinary care remain critical
... See MoreSee Less

🌟 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬 𝐨𝐟 𝐭𝐡𝐞 𝐬𝐞𝐜𝐨𝐧𝐝 𝐝𝐚𝐲 𝐨𝐟 𝐭𝐡𝐞 #𝐋𝐮𝐩𝐮𝐬𝐀𝐜𝐚𝐝𝐞𝐦𝐲𝟐𝟎𝟐𝟒 𝐌𝐞𝐞𝐭𝐢𝐧𝐠❗

🤩 What an incredible day with insightful sessions and important discussions about #SLE!

💫 𝐖𝐞 𝐚𝐫𝐞 𝐢𝐧𝐜𝐫𝐞𝐝𝐢𝐛𝐥𝐲 𝐩𝐫𝐨𝐮𝐝 𝐨𝐟 𝐭𝐨𝐝𝐚𝐲𝐬 𝐰𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐥𝐞𝐝 𝐛𝐲 𝐨𝐮𝐫 𝐂𝐡𝐚𝐢𝐫, 𝐉𝐞𝐚𝐧𝐞𝐭𝐭𝐞, 𝐚𝐥𝐨𝐧𝐠𝐬𝐢𝐝𝐞 𝐏𝐫𝐨𝐟. 𝐀𝐫𝐧𝐚𝐮𝐝 𝐚𝐧𝐝 𝐃𝐚𝐥𝐢𝐥𝐚, 𝐨𝐧 𝐢𝐧𝐜𝐨𝐫𝐩𝐨𝐫𝐚𝐭𝐢𝐧𝐠 𝐭𝐡𝐞 𝐩𝐚𝐭𝐢𝐞𝐧𝐭’𝐬 𝐩𝐞𝐫𝐬𝐩𝐞𝐜𝐭𝐢𝐯𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐦𝐚𝐧𝐚𝐠𝐞𝐦𝐞𝐧𝐭❗

Stay tuned for tomorrow, where well dive deeper into the insights shared!

📝 Heres a recap of the key moments:

🫀 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐜𝐚𝐫𝐝𝐢𝐨𝐯𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐚𝐧𝐝 𝐥𝐮𝐧𝐠 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 #𝐥𝐮𝐩𝐮𝐬
Dr. Bernardo Pons-Estel and Dr. Anisur Rahman tackled the complexities of managing heart and lung complications in #SLE, emphasising early detection and intervention to reduce risk.

🩸 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐡𝐚𝐞𝐦𝐚𝐭𝐨𝐥𝐨𝐠𝐢𝐜𝐚𝐥 𝐩𝐫𝐨𝐛𝐥𝐞𝐦𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
Dr Ricard Cervera and Dr Raquel Faria discussed the importance of addressing haematological issues in lupus, including anaemia and thrombocytopenia.

🌍 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐬𝐤𝐢𝐧 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
Dr Andrea Doria and Dr Annegret Kuhn highlighted the challenges of treating lupus skin involvement, stressing the role of dermatologists in multidisciplinary care.

🤰 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐩𝐫𝐞𝐠𝐧𝐚𝐧𝐜𝐲 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
Dr Sandra Navarra and Dr Irene Bultink covered the delicate balance of managing lupus during pregnancy, with an emphasis on preconception counselling and close monitoring throughout gestation.

💉 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐛𝐢𝐨𝐥𝐨𝐠𝐢𝐜𝐬/𝐭𝐚𝐫𝐠𝐞𝐭𝐞𝐝 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐧𝐞𝐩𝐡𝐫𝐢𝐭𝐢𝐬
Dr. Maria Dall’Era and Dr. Alexandre Voskuyl presented the latest advancements in biologics and targeted therapies, focusing on personalised treatments for lupus nephritis.

🔬 𝐍𝐨𝐯𝐞𝐥 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬
The afternoon covered novel therapies, including CAR-T cell therapy, where Dr Ronald van Vollenhoven and Dr Richard Furie addressed the potential and limitations of these emerging treatments for lupus. While CAR-T holds promise, its crucial to manage expectations.

🫀 𝐇𝐞𝐚𝐫𝐭, 𝐛𝐨𝐧𝐞𝐬, 𝐚𝐧𝐝 𝐞𝐲𝐞𝐬
The session on cardiac diseases by Dr Wouter Kok, lupus and bone health by Dr Judith Bubbear, and lupus and the eyes by Dr Joeri de Hoog provided invaluable insights into managing organ-specific complications in lupus patients. Early detection and multidisciplinary care remain criticalImage attachmentImage attachment+7Image attachment
3 days ago

🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam!

The day was packed with insightful talks and lively discussions on #lupus research and management.

🦋 Some of the key highlights included:

✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson.
✨ Lupus and cancer by Dr Sasha Bernatsky.
✨ Lupus and infections led by Dr Bregtje Lemkes.
✨ Lupus and vaccinations by Dr Reşit Yıldırım.

🗣️ Plus, enriching panel discussions on these crucial topics!

💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen.

🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE.

🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven.

🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 .

🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today!

𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates!

📲💻 twitter.com/LupusEurope

#LupusAcademy2024
... See MoreSee Less

🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam!

The day was packed with insightful talks and lively discussions on #lupus research and management.

🦋 Some of the key highlights included:

✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson.
✨ Lupus and cancer by Dr Sasha Bernatsky.
✨ Lupus and infections led by Dr Bregtje Lemkes.
✨ Lupus and vaccinations by Dr Reşit Yıldırım.

🗣️ Plus, enriching panel discussions on these crucial topics!

💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen.

🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE.

 🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven.

🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 .

🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today!

𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates!

📲💻  https://twitter.com/LupusEurope

#LupusAcademy2024Image attachmentImage attachment+7Image attachment

2 CommentsComment on Facebook

My partner was diagnosed with SLE lupus in 2023,we have to give a try on herbal supplements which effectively get rid of herbal Systemic lupus erythematosus (SLE) condition dramatically. After 13 weeks of her usage, my wife lost touch with reality. Suspecting it was the medication I took her off the corticosteroids (with the doctor’s knowledge) and started her on the lupus natural herbal formula we ordered. It is advisable to always try natural herbs at first because MULTIVITAMIN HERBAL CURE ( www. multivitamincare. org ) neutralizes her SLE lupus which surprises everyone at home.

I’ve been through a similar journey and understand your concern. Natural alternative remedies by Dr osewen solution home is a game changers. I was struggling with Psoriasis,thyroid , Fibromyalgia and chronic pains for 3 years. Have you tried reaching out to any support group or organization for help.I wholeheartedly recommend reaching out to him through his Facebook webpages : www.facebook.com/103770562521545 Your path to recovery may be closer than you think. Sending love 💕 xx

5 days ago

Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven.

📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the "Living With Lupus in 2024" survey results.

🌟 Continuous education and skill development are essential to fulfil our mission 💪.

❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe.

🗣️ Our sincere thanks also go to all the patients who participated in our "Living With Lupus in 2024" survey.

🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients' needs.

✅ Let's keep getting involved in research! The more patients respond, the more significant and impactful the data will be.
... See MoreSee Less

Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven.

📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the Living With Lupus in 2024 survey results.

🌟 Continuous education and skill development are essential to fulfil our mission 💪.

❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe.

🗣️ Our sincere thanks also go to all the patients who participated in our Living With Lupus in 2024 survey. 

🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients needs. 

✅ Lets keep getting involved in research! The more patients respond, the more significant and impactful the data will be.Image attachmentImage attachment+6Image attachment

1 CommentComment on Facebook

Congratulations to all of you in Lupus Europe for all the great work you do! 💪👏☝️👌

6 days ago

🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
... See MoreSee Less

🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life. 

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being. 

🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy. 

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care. 

🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-beingImage attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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