IAPO congress (day 2) – Anne Charlet

Hello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage).  We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo.    UHC is a global project with the goals : health […]

Members – Save the date

LUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…

IAPO congress – Anne Charlet

HI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference!   From www.iapo.org.uk  “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]

IAPO congress 9-11 April (press release)

Patients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]

World Lupus Day – W.H.O. petition

In one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]

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2 days ago

🫂This month, #KickLupus focuses on the power of support. Because whether you’re navigating lupus yourself or supporting someone who is, one thing is clear: no one should face it alone.

🦋 #Lupus is a lifelong condition that can potentially impact any tissue or organ in the body, affecting many aspects of life.

‼️It can also affect our mental health!

🌈 That’s why finding support is so crucial—it can transform how we cope with lupus, manage this autoimmune condition and thrive in life.

Check out the one in your country on our website and get in touch! www.lupus-europe.org/lupus-members/
... See MoreSee Less

🫂This month, #KickLupus focuses on the power of support. Because whether you’re navigating lupus yourself or supporting someone who is, one thing is clear: no one should face it alone.

🦋 #Lupus is a lifelong condition that can potentially impact any tissue or organ in the body, affecting many aspects of life.

‼️It can also affect our mental health!

🌈 That’s why finding support is so crucial—it can transform how we cope with lupus, manage this autoimmune condition and thrive in life.

Check out the one in your country on our website and get in touch! https://www.lupus-europe.org/lupus-members/Image attachmentImage attachment+3Image attachment

1 CommentComment on Facebook

I"m from Portugal 💜 Don't have much suport😢

4 days ago

The Lupus Europe Youth Group Webinar on SEX and #lupus is just around the corner!

🗓 May 3rd | 19h CET
🎙 With Dr Cristiana Sieiro Santos
Don’t miss this chance to talk openly about this topic in a safe and informative space!
📩 Register now:
secretariat@lupus-europe.org
... See MoreSee Less

1 week ago

🚨 Today is #wordday2025! which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #sle in children at #Lupus100: f.mtr.cool/gfhbfdafvv

For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
... See MoreSee Less

🚨 Today is #WORDDAY2025! which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your childs doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #SLE in children at #Lupus100: https://f.mtr.cool/gfhbfdafvv

For more information on WORD Day,  you can visit World Young Rheumatic Diseases Day - WORD DayImage attachmentImage attachment+6Image attachment

2 CommentsComment on Facebook

Herbalist SIMEON 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜o𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇👇 www.facebook.com/doctorsimon1

𝐃octor Droigiangbe u* 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜𝐨𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇 www.facebook.com/Droigiangbe-114637101534059/

2 weeks ago

🔴 Tomorrow is #WORDDAY2025!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (multiple languages):

f.mtr.cool/qrvtyjqmpf
... See MoreSee Less

🔴 Tomorrow is #WORDDAY2025!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (multiple languages):

https://f.mtr.cool/qrvtyjqmpf