Awaiting a #lupus or related #diagnosis and not feeling listened to? We can support you to navigate the health service, share tools on how to best communicate with healthcare professionals, and provide information on how to document accountability for decisions made about your care. 💬🗨️

Preparing for a specialist appointment? 🩺 @lupuseurope.bsky.social have created FREE Lupus Consultation Cards to help people with #lupus prepare for consultations by identifying symptoms and preparing questions for their #healthcare team. 🔗Learn more: https://bit.ly/3Sn75yV #LupusPatientSupport

Join our email community! ✨ Sign up to our email newsletter to receive monthly updates on latest news and advancements in #lupus, events, research, volunteering, and community stories.  📩 Sign up today to stay in the loop: https://lupusuk.org.uk/newsletter-sign-up/

Lupus in the news! 📰 You may have spotted our Health Information, Policy, & Research Manager, Debbie Kinsey, on BBC Look East yesterday evening in a story on lupus and CAR-T.

Want to get involved with #lupus #research? 🔬 🔗Find current opportunities at: https://lupusuk.org.uk/current-research/ Each study is run independently by the research team (not by Lupus UK) unless stated otherwise. #PatientInvolvement #PatientResearch

Are you living with #lupus or supporting a loved one, awaiting a diagnosis, or live with an associated condition in Northern Ireland? Come along to our #NorthernIreland Virtual Meet! 💻 🗓️Tuesday 11th August 🕧12:30pm - 1:30pm 🔗Limited tickets! Sign up for free: https://bit.ly/456OjPe #NISupport

Come along to our August & September Virtual Support Groups! 💻📱 Our groups offer a safe space to learn more about #lupus and connect with others who are going through similar experiences. Email Support@LupusUK.org.uk for more. 💜 #LupusSupport #SupportGroup #LupusCommunity

We’re moving!! 💜🏢 We’re excited to share that from 1st September we are relocating to Farringdon! 📦 1/4

On Thursday 9th July, our CEO Caroline attended the "Lupus in Black" Conference in Bolton, a meaningful event that brought together researchers, clinicians and people with lived experience to explore how race, culture and social systems shape the #lupus journey.  (1/3)

Recently, Lupus UK submitted evidence to NICE. This is to help them decide if they should approve obinutuzumab for use in the NHS in England and Wales. We included the community’s views on what living with #lupus and current #treatment is really like.

You may have seen news about a new treatment for #lupus being tested in the CARLYSLE clinical trial. The treatment being tested is CAR-T cell therapy, which is already used to treat some cancers. Scientists think it could be helpful in conditions that affect the immune system too. 1/2

‼️Applications to join Team Lupus UK for the London Marathon 2027 are closing soon! 🏅💜 🔗 Apply online at https://bit.ly/4gy0nj4 by 5:00pm on Monday 13th July. #TCSLondonMarathon #Marathon #Runner #Fundraising

Thank you so much to everyone who responded to the survey: “What matters most to you about future SLE treatment?” We understand that some questions might have brought up sensitive topics. Thank you so much for being so open. It’s important we hear this so we can accurately reflect your experiences.

The "Lupus in Black: Science, Stories & Systems of Recovery & Flourishing” conference is taking place on 9th July from 9:00am - 5:30pm. Attend online or in person at Deane Lecture Theatre, University of Greater Manchester, Bolton, BL3 5AB. 🔗Interested? Sign up by 5th July: https://bit.ly/4vNcfmg

We are excited that the updated British Society for Rheumatology (BSR) guidelines for #lupus have now been published.  This update represents a huge amount of progress in research, understanding, and treatment over the last 10 years since the first UK guidelines.

Come along to our upcoming Virtual Support Groups! Our groups offer a safe space for individuals to learn more about #lupus and connect with others who are going through similar experiences. 💬 For more information or to stay informed about future support groups, email Support@LupusUK.org.uk 💜

🍽️ However you like to gather with family and friends this summer, you can turn it into a #Lunch4Lupus event and make a real difference to people living with #lupus. Whether it’s a coffee morning, BBQ, afternoon tea, picnic or dinner party, the choice is yours.

Ready to take on the challenge of a lifetime? 👟 Applications to join Team Lupus UK for the London Marathon 2027 are now open!! 🏅💜 🔗 Apply online at bit.ly/4gy0nj4 by Friday 10th July! #TCSLondonMarathon #Marathon #Runner #Fundraising

NICE is reviewing whether to approve obinutuzumab for SLE in England and Wales.  Help Lupus UK share what living with lupus and current treatment is really like. Your responses will help us tell NICE what people affected need from treatment and care. You do not need to have taken obinutuzumab.

We are so pleased to share that for the first time ever, our Lupus UK London Marathon team have raised over £100,000 to support the #lupus community! ⭐ We couldn't be prouder of our wonderful LM26 team. THANK YOU for your phenomenal efforts and to everyone who made it possible by donating! 💜

NICE is looking at whether #obinutuzumab should be used by the NHS in England and Wales for systemic #lupus erythematosus (SLE). Lupus UK is preparing evidence to share with NICE. We want to make sure this reflects the experiences and priorities of people affected by #SLE.

❗UPDATE: Our National Virtual Support Group planned for Tuesday 30th June will now take place on Tuesday 23rd June.

Lupus UK@lupusuk.bsky.social · 3mo ago

Come along to our Virtual Support Groups in June. 💻📱 Our groups offer a safe space for individuals to learn more about #lupus and connect with others who are going through similar experiences.

We have 4 spaces available for Vitality London 10k on the 27th September! 🏅🏃 If you would like a space running for Lupus UK, please email fundraising@lupusuk.org.uk 💜 #Vitality10k #Running #Fundraising

Inspired to make a difference in the lupus community this #VolunteersWeek?  We are seeking compassionate and dedicated individuals to join our team as Home-Based Support and Information Line Volunteers. 📞

This week is #VolunteersWeek! 💜 We’d like to say a huge thank you to our fantastic #Volunteers, Trustees, Ambassadors, Fundraisers and Supporters who dedicate their time to help our work supporting the #lupus community. Your contributions are invaluable. ⭐ #ThankYouVolunteers

Come along to our Virtual Support Groups in June. 💻📱 Our groups offer a safe space for individuals to learn more about #lupus and connect with others who are going through similar experiences.

Last chance to sign up for the ADAPT study which is looking at how Tai Chi and Pilates classes online (free for 8 weeks if allocated to one of those groups) may improve fatigue and mental health.

The Scottish Report has been published 📢 Over 1,250 people across Scotland shared their experiences of living with conditions including lupus, highlighting issues such as delays in diagnosis, challenges in managing their condition, and the impact on everyday life.

Want to get involved with lupus #research? 🔬 You can find current opportunities over on our website: https://bit.ly/4tUIMFc Taking part in research can help lead to improved care and quality of life for people living with #lupus.  ❔If you have any questions, please contact research@lupusuk.org.uk

We would like to say a huge THANK YOU and GOOD LUCK to everyone running the Edinburgh Marathon on Sunday and raising funds for Lupus UK! 🏅 We are SO proud of you all!! 💜⭐ #EdinburghMarathon #Fundraising #Running #Marathon #Lupus