Alain CornetIn the context of EPF’s recent multi-stakeholder conference on Patient Safety, Katharine was asked to tell her story as an example of patient safety in a chronic disease setting. You can read about it on EPF’s blog.
🚨 #Kidney disease is a silent illness. Getting to recognise its symptoms is key to getting an early diagnosis and preventing potential complications:
1️⃣ Urine changes (in frequency or colour)
2️⃣ Swelling in 🤲 🦶 🦵
3️⃣ Foamy urine
4️⃣ High blood pressure
#WorldKidneyDay
‼️ Although #lupus nephritis remains one of the most serious complications for #SLE patients, early diagnosis and adequate treatment make remission possible in many cases.
✅ To achieve this, it is crucial that patients do not skip their routine check-ups.
#WorldKidneyDay
🚨 It is estimated that about 40% of #SLE patients will suffer from #lupus nephritis: one of the most dangerous & frequent complications of SLE- Carmona L. et al.
✅ Routine check-ups and early detection of symptoms are key to an early diagnosis.
#WorldKidneyDay
✅ The final version of the #SLAKE paper, the Systemic #Lupus Assessment of essential Knowledge instrument, is now published online at https://doi.org/10.1093/rheumatology/keaf649
Thank you all for your support and your participation 👍
✅ Key messages from the 'early #Lupus diagnosis' fishball at #ELM2026
- Early diag particularly important for non-severe patients (because severe often diag quickly)
- #Redflags/education for GPs is key
-Access to care/rethinking pathways
-Role for biomarkers (e.g. ANA+IFN)
🦋 #Lupus is a chronic autoimmune disease that can affect any organ or tissue in the body.
🆘 One of the most serious manifestations of systemic #lupus erythematosus is lupus nephritis.
Today is #WorldKidneyDay, and we support #KidneyHealthForAll campaign by @worldkidneyday
🇵🇹What a week at #ELM2026!
You may have noticed Lupus Europe was quiet on social media… simply because we were fully involved in the meeting.
🔹12 Fishbowl Chairs
🔹9 abstracts supported
🔹Our Chair, @Jeanette_Lupus, at opening & closing
🔹6 co-chairs
🔹3 session interventions
🤩 Thank you for your support this #RareDiseaseDay!
💪 Along with organisations like @rarediseaseday and @eurordis, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌
#ShareYourColours
#rarediseaseday
🔴 Although lupus nephritis remains one of the most serious complications for SLE patients, early diagnosis and adequate treatment make remission possible in many cases ✅.
🦋 Kidney disease is a silent illness. Getting to recognise its symptoms is key to getting an early diagnosis and preventing potential complications:
1️⃣ Urine changes (in frequency or colour)
2️⃣ Swelling in 🤲 🦶 🦵
3️⃣ Foamy urine
4️⃣ High blood pressure
Prevention is key! There are many ways to take care of your kidneys:
1️⃣ Have an active life 🚶♂️ 🏃♀️
2️⃣ Don't smoke 🚭
3️⃣ Have a healthy diet 🥗 🍏
4️⃣ Check & control your blood sugar & blood pressure
5️⃣ Take the appropriate fluid intake
6️⃣ Don't take NSAIDs regularly
#WorldKidneyDay
#KidneyHealthforAll
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🚨 Today is #WorldKidneyDay! And we are supporting the World Kidney Day campaign.
People with kidney disease are among the most vulnerable people in an emergency because of their ongoing need for consistently coordinated care, which is often lifelong and involves complex ongoing treatment.
🦋 It is estimated that about 40% of #SLE patients will suffer from #lupus nephritis: one of the most dangerous and frequent complications of #SLE. Routine check-ups and early detection of symptoms are key for getting an early diagnosis.
#kidneyhealthforall
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🇵🇹 What a week at the European Lupus Meeting 2026 in Lisbon!
You may have noticed something unusual…
🤫 Lupus Europe has been very quiet on social media throughout the Congress.
The reason? We were way too busy contributing, participating and engaging throughout #Lupus2026!
Here are just a few highlights of Lupus Europe’s involvement:
🔹 12 Fishbowl Chairs
🔹 9 abstracts supported by Lupus Europe
🔹 Our Chair, Jeanette Andersen, speaking at both the opening and closing ceremonies
🔹 6 Lupus Europe co-chairs at scientific sessions
🔹 3 interventions in sessions and interactive workshops
🚀 Beyond the scientific programme, the meeting was also completely full of valuable discussions and working meetings for ongoing projects that we are excited to share with you soon.
Over the coming weeks, we will share more about what happened in Lisbon, so keep an eye out for news!
📅 Meanwhile, don’t miss our ELM 2026 Recap Webinar as viewed by our PAN members, who were there!
🗓 16 March
⏰ 19:00 CET (i.e. Paris time)
💻 Zoom
Register now, to hear the key takeaways and highlights from this important European meeting.
Just email: secretariat@lupus-europe.org
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Today is rare disease day!
🚨 There are over 300 million people who live with a #raredisease in #europe.
🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.
🔴 Some facts about #rarediseases:
1️⃣ There are more than 6000 identified rare diseases.
2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.
3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.
4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.
5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.
Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.
Thank you for your support on this #rarediseaseday!
#ShareYourColours
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