LUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and to build on some of our skills.
The conference was opened by Ms. Marianne Thijsen, the EU commissionaire for employment and Social affairs. She highlighted the commission’s progress on defining “European pillars of social rights”, 20 statements that should guide future EU Social policy. Three of those statements are particularly relevant as anchors to our work : (i) Everyone has the right to timely access to affordable, preventive and curative health care of quality; (ii) Access to safe work environment, fit for everyone; (iii) Right to inclusion for people with disabilities (including income support that ensures living in dignity, services that enable to participate in the labour market and in society, and a work environment adapted to their needs).

Another key statement that she made is that while some would like healthcare to be left entirely up to each country, she disagrees: “Arthritis does not know borders. Pain does not ask for your passport. There is a need to tackle health together: We can learn from each other, there should be no 2nd class citizens in Europe”. This is both the recognition of a threat, and a very nice statement on the need for EU health policy.

The conference then mostly evolved around the EULAR campaign “Don’t Delay, Connect Today”. If you are not yet familiar with this European wide campaign, see more on this link and offer your full support to this important initiative. Early diagnosis is a key priority, in Lupus and other RMD’s and can save a lot of personal hardship thanks to early treatment. The delegates very largely voted for a continuation of this campaign for at least another 2 years, so we can reach a maximum number of people.

Finally, a fun souvenir starring our chair, Jeanette Andersen who is reminding us of the importance of exercise.

[wpvideo nyYgZqqJ]

 

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10 hours ago

🦋 It's #LupusAwarenessMonth❗

🦵 #KickLupus: make it visible

Take part in the Living With Lupus in 2024 survey.

🗣️Your insights are crucial for capturing the diverse experiences of those living with #lupus across Europe.

𝗞𝗲𝘆 𝗽𝗼𝗶𝗻𝘁𝘀 𝗼𝗳 𝘁𝗵𝗲 𝘀𝘂𝗿𝘃𝗲𝘆:

1️⃣ Confidential and brief: Your identity stays anonymous and takes only 15 minutes.
2️⃣ Personalized and relevant: The survey adapts to your unique situation and covers aspects pertinent to your life with lupus.

👨‍💻 We're gathering data to:

🔹 Understand the current landscape of lupus treatment and management in Europe.
🔹 Identify key areas for support and improvement.
🔹 Ensure that the voices of those living with lupus are heard.
🔹 Recognise the diverse needs and challenges faced by the lupus community.

🦋 This survey will dive into your unique experience on 🩺 diagnosis & symptoms, 💊 treatment & 👨‍👩‍👧‍👦 how lupus affects your daily activities and the strategies you employ to manage it.

🔄 Please 𝘀𝗵𝗮𝗿𝗲 𝘁𝗵𝗶𝘀 𝘀𝘂𝗿𝘃𝗲𝘆 with your community and on your social media.

Languages available:

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Association Lupus erythémateux Belgique Luupuse Selts / Lupus Estonia Организация на пациентите с ревматологични заболявания Σύνδεσμος Ρευματοπαθών Κύπρου ΣύΡεΚ Lupus Suomi ry Association Francaise du lupus et autres maladies auto-immunes AFL + LUPUS FRANCE Lupus Erythematodes SHG e.V. Ελληνική Εταιρεία Αντιρευματικού Αγώνα ΕΛ Ε ΑΝ Α Lupus Poland Lupus Klub Motýlik Reumatikerförbundet Lupus UK Felupus Associação de Doentes com Lúpus
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♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍️ Responda à pesquisa e compartilhe com sua comunidade.

🙏 Help us & Associação de Doentes com Lúpus achieve more answers to ensure that the Portuguese population is represented in the results

s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi

#LupusAwarenessMonth
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2 days ago

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

✍🏻Compila il sondaggio.

🔊Condividi con il tuo network.

s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0

🙏 Help us and Gruppo LES Italiano ODV achieve more answers to ensure that the Italian population is represented in the results
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1 CommentComment on Facebook

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3 days ago

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist”

🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗲𝘅𝗰𝗹𝘂𝘀𝗶𝘃𝗲𝗹𝘆 𝗯𝘆 𝗼𝘂𝗿 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 CET.

🙌 A space dedicated to discussing issues that impact youth, by the youth and for the youth.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from a youthful perspective.

👩‍⚕️ Joining us will be the talented young rheumatologist from Italy, Francesca Crisafulli, who will answer your questions and engage in meaningful conversation.

Don't miss the chance to interact directly with a specialist in rheumatology!

🦋 At Lupus Europe, we deeply understand the importance of paying attention to the needs and voices of the young. This webinar reflects our commitment to supporting and including youth in the dialogue on living with lupus.

‼️ Register now by sending an e-mail to secretariat@lupus-europe.org ‼️
... See MoreSee Less

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist”

 🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗲𝘅𝗰𝗹𝘂𝘀𝗶𝘃𝗲𝗹𝘆 𝗯𝘆 𝗼𝘂𝗿 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 CET.

🙌  A space dedicated to discussing issues that impact youth, by the youth and for the youth.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from a youthful perspective.

👩‍⚕️ Joining us will be the talented young rheumatologist from Italy, Francesca Crisafulli, who will answer your questions and engage in meaningful conversation.

Dont miss the chance to interact directly with a specialist in rheumatology!

🦋 At Lupus Europe, we deeply understand the importance of paying attention to the needs and voices of the young. This webinar reflects our commitment to supporting and including youth in the dialogue on living with lupus.

‼️ Register now by sending an e-mail to secretariat@lupus-europe.org ‼️

1 CommentComment on Facebook

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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