🚨 Do men with #lupus receive the support they need? 😃 Join us today at room C3, as @rickychotai.co.uk#lupus Special Advisor to the Board & Co-leader of our Men's network, presents data from our Swiss Knife Survey on stigma, #depression & unmet needs of men living with #SLE. #EULAR2025

🦋Lupus Europe’s 2024 Swiss Knife Survey is now published in Autoimmunity Reviews! With 4525 responses from 36 countries, it’s a🔝step forward in understanding the real burden of SLE from the patient’s perspective. https://f.mtr.cool/xrvljwnsvd

🌟 Being a finalist in the 2025 Made with Patients Awards is recognition of LupusGPT’s mission to empower the #lupus community with: ✅ Reliable, evidence-based information about lupus ✅ Free access ✅ Multilingual support to break language & literacy barriers

😃Our Board & Extended Board met last week for2️⃣exciting days of work on the strategic plan. Joined by NVLE to kick off the planning of our 2025 Convention, which will take place in the Netherlands! 👥Also hosted an engaging Industry Roundtable, with updates, workshops and more!

Big news! 🎉 My abstract, “Living with lupus as a man – a major challenge to image of self”, has been selected for an Oral Presentation at #EULAR2025 in Barcelona! 💜 Grateful for @lupuseurope.bsky.social support & excited to share this important topic. #LupusAwareness #Rheumatology

Off to Amsterdam for my first @LupusEurope board meeting !

@lupusuk.bsky.social is conducting a survey to understand what is important to you as someone living with lupus, or caring for someone with #lupus, and what you think the charity should be focusing on to better support your needs. For more information, visit: www.lupusuk.org.uk/2025/03/04/survey

UK healthcare pros & lupus researchers: Your input is crucial! 🏥🔬 Help @lupusuk.bsky.social shape support for lupus patients. Quick, anonymous survey closing May 1st, 4PM BST. Your expertise can make a difference! Survey link: bit.ly/Lupussurveyhcp #Lupus #UKHealthcare #LupusResearch

Today I think is very much a moment in history and sadly for the world it feels even more scary. The Ukrainian people have fought hard for their freedom and it is not up to Trump if and when they should compromise.

Wendy is an amazing advocate and campaigner for #lupus and volunteers significantly for @lupusuk.bsky.social. We the #lupus community are lucky to have her!

Last night, the chapel facade of Magdalen College was lit up ahead of #RareDiseaseDay. A disease is classed as rare when it affects fewer than 1 in 2000 people and there are over 3.5 million people living with a rare condition in the UK alone. 📷 | @oxfordpaediatrics.bsky.social

Thanks for sharing #lupus

✨ *Breaking News!* ✨ The latest issue of *New Scientist* highlights amazing progress in autoimmune disease research (lupus, rheumatoid arthritis, Type 1 diabetes). Hope is on the horizon! 💜 Read about CAR-T cell therapy for lupus via @lupusuk.bsky.social : lupusuk.org.uk/2024/11/08/c...

Just wrapped up our virtual trustee board meeting at @lupusuk.bsky.social 📊💻! Exciting plans ahead for our 35th year 🎉 and a fresh strategy on the horizon 🚀. Let's make it a year to remember! 💜 Follow @lupusuk.bsky.social for more updates 📱 #LupusUK #Lupus

Wrapped up my final onboarding meeting with @lupuseurope.bsky.social today! Excited to dive into impactful projects for the European Lupus Community, including exploring the intersection of #sex and #lupus. Thrilled to work alongside such an inspiring team!

🦋 Lupus Europe, Prof Arnaud, and Dr @go-daniel.bsky.social are thrilled to unveil LUPUS-ALERT! 🌍 A groundbreaking global project to transform SLE care: 𝐋𝐔𝐏𝐔𝐒 erythematosus glob𝑨L cont𝐄xt sc𝐑eening 𝐓ool.   Thank you to all the Doctors & patients driving this key project forward!

I have not seen this sort of innovation in the Health Charities or non profits. Great to see AI being used to improve the patient experience. #lupus #ai #innovation

Ooo welcome to Bluesky @lupuseurope.bsky.social if you are interested in #Lupus things check them out. If you are UK based check out @lupusuk.bsky.social

I'm Ricky, based in Manchester. Living with #Lupus and doing some volunteer work with two brilliant organisations - @lupusuk.bsky.social and Lupus Europe. When I'm not going on about #lupus, you'll probably see me posting about #LoveSUs and #realitytv.

An excellent meeting with the #LupusEurope team. So many exciting projects going on. Looking forward to the next few months. #Lupus

Stark facts about health care inequality for lupus patients in the UK. @lupusuk.bsky.social #lupus

🤯 Never thought I'd be co-authoring an abstract for submission to the European Alliance of Associations for Rheumatology (@EULAR)! Stepping outside my comfort zone has been an incredible learning experience. ✨ Fingers crossed for acceptance! #Research #Teamwork #lupus

#TheTraitors sponsored by kleenex

Amazing episode of #TheTraitors tonight!

okay I love this diva 💅 #TheTraitors

i'm sorry to hear that your grandma passed away yeah i actually am like obviously i'm i'm going to be upset about that ... and I don’t wanna be mates with you alright’ #TheTraitors

🦋 Important #Lupus debate in Westminster Hall - Tues 10th Dec, 9:30am!Jim Shannon MP is raising rare autoimmune rheumatic diseases. This is our chance to be heard!📝 Want your MP to attend?https://bit.ly/lupus-template .Let's make our voices count! 💜#LupusAwaness #RareDisease #lupus

Stuck on an awful rammed @crosscountryuk.bsky.social train luckily I have a seat. This track is making the journey manageable. Such a Tune! M83- Midnight City (Eric Prydz Private Remix) youtu.be/iE7dy6NQzxM?... #ClassicDanceAnthems

Also how do brands not know how to use @bsky.app . Like @crosscountryuk.bsky.social @vodafonegroup.bsky.social @northernassist.bsky.social surely you would self verify to show you are legitimate. Takes 2 mins with a txt file on your domain.

Time to pray to the gods that I will actually get a seat on my @crosscountryuk.bsky.social train tomorrow. In peak times

This is worrying and shows that supermarkets need to take procurement / supply chain more seriously. BBC News - ‘Italian’ purees likely to contain Chinese forced-labour tomatoes - BBC News www.bbc.co.uk/news/article...

This exactly...

This was me yesterday. WHY ARE YOU LIKE THIS, BODY? WHO HURT YOU, CAUSE IT WASN’T ME! #lupus #POTS #MALS #spoonie #chronicallyill #funny

@c-flurey.bsky.social Are you interested in the topic of lupus in men? I would love to connect with you. I am involved with Lupus UK and Lupus Europe, and this is a passion of mine. I would be delighted to speak with you if this is an area of interest for you.

‼️Are you a health professional in the UK who works with people with #lupus ? Please complete our survey study funded by Lupus UK to help find out how to best support you to support these patients: uwe.eu.qualtrics.com/jfe/form/SV_... #medsky #rheumsky #rheumatology

Honoured to join the "Building Inclusive Boards" panel with Association of Chairs and Action for Trustee Racial Diversity . Inspiring discussion on creating diverse and inclusive boards. Let's work together for a more equitable future. #inclusivity #diversity #charity #trustees #boardgovernance

🌟 Exciting news! I’ve moved to Bluesky Social as my new go-to platform. 🚀 It’s growing fast with 1M new sign-ups post-US election. 🔄 No algorithm tinkering here: Bluesky shows posts based on genuine engagement. Let’s connect!

Exciting news! New lupus treatment could mean no more lifelong meds! 💊 www.theguardian.com/science/2024... 🙅‍♀️ CAR T-cell therapy shows promise, but it's a long way off for NHS patients. ⏳ Learn more from Lupus UK: lupusuk.org.uk/2024/11/08/c... #Lupus #MedicalResearch #Hope

While this is exciting news it is a long way off being a treatment people can readily access in the UK with Lupus at the moment. Lupus UK has an excellent article on this topic. lupusuk.org.uk/2024/11/08/c...

Excited to be heading to Romford for a day with the incredible team at @LUPUSUK! Tomorrow we've got a packed board meeting, discussing groundbreaking initiatives to support the Lupus Community. We'll be reviewing a range of exciting research funding requests. #Lupus #Research 😃

Well said @AndyBurnhamGM BBC News - Northern rail services embarrassing, Mayor Andy Burnham says - BBC News

That’s a wrap! 🎬 On my way home from an incredible @LupusEurope Convention & Men’s Day! 🐺❤️ It was amazing reconnecting with the European Lupus community. Can’t wait to see what the year ahead brings! 🎉 #Lupus #LupusAwareness

So flying with a disability is not easy but the special assistance at both @flughafen_wien and @BrusselsAirport have been outstanding. Made my connection with ease and friendly staff. Thankyou 👍🏽

Currently at @LupusEurope convention. Loving that they do a walk with #alpacas in Lupus Norway @Revmatikerforb how cool is that @LUPUSUK #lupus

Massive thanks to the @flughafen_wien assistance team! So lovely and helpful. 💜 @_austrian

Taking a break from my day job in Manchester to head to Slovakia for the @LupusEurope Convention! 🌍 Excited to connect with other advocates and learn about the latest research. Plus, I'm facilitating a session for men with Lupus. 💪 #Lupus #LupusEurope #Advocacy #MenInHealth

Traveling in Vienna on the train is 100x better than the UK. Easy friendly clean and on time. This is how public transport should be done.

Who had SClub and Martine McCutcheon on their bingo score card for supermarket adverts. Who let the millennials out...

With the 🦋 @LupusEurope team and our amazing patients, we’re turning survey data into 🔥 abstracts! So much valuable info from the Lupus Community across Europe. Can’t wait to share this with @eular_org and the wider #lupus community! #kicklupus 💪💜

Today at @BrusselsAirport, I was asked to prove my disability by providing a card. Insisting on such documentation is discriminatory. Please ensure your staff are trained to recognise and accommodate individuals with all types of disabilities. #lupus #DisabilityTravel