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Lupus UK

@lupusuk.bsky.social
111 followers 29 following 389 posts

The national registered charity supporting people with #lupus

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Lupus UK @lupusuk.bsky.social · 12h
October is #LupusAwarenessMonth, a time to raise awareness, deepen understanding and shine a light on the realities of living with #lupus. 💜 This year, our theme is ‘More Than a Diagnosis.’ Lupus can affect so much more than physical health and everyone’s experience of this can look different.
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Lupus UK @lupusuk.bsky.social · 22/09/2026
Are you living with #lupus or an associated condition, or supporting a loved one in the South West Region of England? Come along to the Lupus UK Devon & Cornwall Online Community Virtual Meet, taking place tomorrow (23rd September) from 12pm-1pm. 🗓️ 📧 Sign up by contacting Infoday@lupusuk.org.uk
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Lupus UK @lupusuk.bsky.social · 18/09/2026
We want to hear from you! 🗨️ As part of our Lupus Awareness Month campaign, we’re looking for people from the #lupus community who would be willing to share their experiences of how lupus has impacted different areas of their lives.
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Lupus UK @lupusuk.bsky.social · 18/09/2026
Has Lupus UK helped you? As part of our Lupus Awareness Month campaign, we’re looking for people from the #lupus community who would be willing to share their experiences of how Lupus UK has supported them.
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Lupus UK @lupusuk.bsky.social · 17/09/2026
📢Aged 18-25 and living with #lupus or a lupus-like condition in Scotland? Come along to our focus group in #Edinburgh We'd love to hear your thoughts and help ensure young people's voices are at the heart of future support! 🔗Sign up: forms.cloud.microsoft/e/KyUCy8ktMA
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Lupus UK @lupusuk.bsky.social · 17/09/2026
📢 Aged 11-30 and living in #Scotland with #lupus or a similar condition? Complete our short survey and help shape the future of support for young people!  🔗https://forms.cloud.microsoft/e/YLxjqjRXN0 #YouthSupport #PatientVoice
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Lupus UK @lupusuk.bsky.social · 16/09/2026
Are you living with #lupus or supporting a loved one, awaiting a diagnosis, or live with an associated condition? Come along to our Lupus Support Group in Newry, Northern Ireland. 🗓️ Sat 26th September 🕧 11am-1pm 📍 The Sugar House, Newry, 7A Sugar House Quay BT35 6HZ Newry, (behind the Court House)
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Lupus UK @lupusuk.bsky.social · 16/09/2026
Living with #lupus or supporting a loved one, awaiting a diagnosis, or live with an associated condition? Come along to the Lupus UK Devon & Cornwall Online Community Virtual Meet! 🗓️Wednesday 23rd September 🕧 12pm-1pm 💻📱Online 👉 Sign up: Infoday@lupusuk.org.uk #Devon #Cornwall #LupusSupport
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Lupus UK @lupusuk.bsky.social · 14/09/2026
Gifts in wills allow Lupus UK to provide support, information and resources to the #lupus community and allow us to help fund #research. 💜 We’ve partnered with expert estate planners, Octopus Legacy, to offer you the chance to write or update your will for FREE today.
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Lupus UK @lupusuk.bsky.social · 09/09/2026
Come along to our upcoming Virtual Support Groups in September and October. Our groups offer a safe space for individuals to learn more about #lupus and connect with others who are going through similar experiences.
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Lupus UK @lupusuk.bsky.social · 07/09/2026
Change starts with a will. And with one simple step, it can start with yours. By giving a gift to Lupus UK your will could leave a lasting legacy of hope, care and research. 💜
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Lupus UK @lupusuk.bsky.social · 04/09/2026
Recently we shared that we are moving to Farringdon! 🏢 📍We are pleased to share with you our new address: Lupus UK The Finsbury Business Centre, 40 Bowling Green Lane, Clerkenwell, London, EC1R 0NE If you plan to write to us, please send mail only to the address above, not our Romford address.
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Lupus UK @lupusuk.bsky.social · 19/08/2026
#Lunch4Lupus is a simple yet effective way to bring together loved ones, raise funds and make a real difference to people living with #lupus. 🍽️💜   For more information and advice on how to organise your event, visit lupusuk.org.uk/lunch4lupus or contact fundraising@lupusuk.org.uk ☕
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Lupus UK @lupusuk.bsky.social · 13/08/2026
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. 💬🗨️
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Lupus UK @lupusuk.bsky.social · 11/08/2026
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: bit.ly/3Sn75yV #LupusPatientSupport
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Lupus UK @lupusuk.bsky.social · 10/08/2026
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: lupusuk.org.uk/newsletter-sign-up
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Lupus UK @lupusuk.bsky.social · 06/08/2026
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.
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Lupus UK @lupusuk.bsky.social · 06/08/2026
Want to get involved with #lupus #research? 🔬 🔗Find current opportunities at: lupusuk.org.uk/current-research Each study is run independently by the research team (not by Lupus UK) unless stated otherwise. #PatientInvolvement #PatientResearch
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Lupus UK @lupusuk.bsky.social · 05/08/2026
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: bit.ly/456OjPe #NISupport
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Lupus UK @lupusuk.bsky.social · 03/08/2026
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
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Lupus UK @lupusuk.bsky.social · 31/07/2026
We’re moving!! 💜🏢 We’re excited to share that from 1st September we are relocating to Farringdon! 📦 1/4
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Lupus UK @lupusuk.bsky.social · 30/07/2026
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)
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Lupus UK @lupusuk.bsky.social · 16/07/2026
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.
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Lupus UK @lupusuk.bsky.social · 10/07/2026
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
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Lupus UK @lupusuk.bsky.social · 08/07/2026
‼️Applications to join Team Lupus UK for the London Marathon 2027 are closing soon! 🏅💜 🔗 Apply online at bit.ly/4gy0nj4 by 5:00pm on Monday 13th July. #TCSLondonMarathon #Marathon #Runner #Fundraising
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Lupus UK @lupusuk.bsky.social · 07/07/2026
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.
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Lupus UK @lupusuk.bsky.social · 02/07/2026
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: bit.ly/4vNcfmg
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Lupus UK @lupusuk.bsky.social · 24/06/2026
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.
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Lupus UK @lupusuk.bsky.social · 22/06/2026
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 💜
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Lupus UK @lupusuk.bsky.social · 19/06/2026
🍽️ 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.
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Lupus UK @lupusuk.bsky.social · 18/06/2026
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
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Lupus UK @lupusuk.bsky.social · 18/06/2026
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.
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Lupus UK @lupusuk.bsky.social · 17/06/2026
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! 💜
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Lupus UK @lupusuk.bsky.social · 11/06/2026
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.
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Lupus UK @lupusuk.bsky.social · 05/06/2026
❗UPDATE: Our National Virtual Support Group planned for Tuesday 30th June will now take place on Tuesday 23rd June.
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Lupus UK @lupusuk.bsky.social · 04/06/2026
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
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Lupus UK @lupusuk.bsky.social · 03/06/2026
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. 📞
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Lupus UK @lupusuk.bsky.social · 02/06/2026
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
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Lupus UK @lupusuk.bsky.social · 28/05/2026
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.
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Lupus UK @lupusuk.bsky.social · 28/05/2026
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.
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Lupus UK @lupusuk.bsky.social · 26/05/2026
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.
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Lupus UK @lupusuk.bsky.social · 25/05/2026
Want to get involved with lupus #research? 🔬 You can find current opportunities over on our website: 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
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Lupus UK @lupusuk.bsky.social · 22/05/2026
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
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Lupus UK @lupusuk.bsky.social · 15/05/2026
Good luck to everyone raising funds for Lupus UK this weekend! Whether you are completing a run or hosting your own event, we are so thankful for your support!! 🌟💜 #Lupus #Fundraising #LupusSupport #LupusCommunity #Marathon
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Lupus UK @lupusuk.bsky.social · 14/05/2026
Our Young People and Family Support Officer, Chelsea can offer 1-1 support calls to Young people aged 18-30 living with lupus or Parent/carers of young people living with #lupus. To schedule a call with Chelsea, visit bit.ly/43766V9 or scan the QR code to their booking page 💜 #LupusSupport
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Lupus UK @lupusuk.bsky.social · 13/05/2026
Please take one minute to nominate us for a chance to win £5,000 in the #MovementForGoodAwards Health and Wellbeing Special Draw.  To Nominate Lupus UK (Charity No 1200671), please click the following link: bit.ly/4nzeAOw 🔗 The draw is open until Sunday 24th May. Thank you! 💜 #Lupus #SLE
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Lupus UK @lupusuk.bsky.social · 12/05/2026
Happy #InternationalNursesDay to our wonderful #rheumatology Nurses across the UK and all #Nurses worldwide. Thank you for supporting the #lupus community in so many ways, Your contributions make a huge difference in the lives of our community, and we are so grateful.🩺💜  #ThankYouNurses
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Lupus UK @lupusuk.bsky.social · 10/05/2026
This #WorldLupusDay, Amber shares her article "The Invisible Reality of #Lupus", highlighting the emotional and physical challenges of navigating an #InvisibleIllness, from grieving her 'old self' to embracing self-acceptance and compassion. 💜 🔗Read the full article at: bit.ly/4uxM5Tp
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Lupus UK @lupusuk.bsky.social · 10/05/2026
We asked the #lupus community, "What helps you feel supported and less alone?" Here’s what our community shared. These responses are a powerful reminder of how important connection and understanding really are. That’s why we offer a range of peer support groups, both online and in person. (1/2)
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Lupus UK @lupusuk.bsky.social · 10/05/2026
#Lupus is an unpredictable condition that can turn everyday life into a challenge, but together, we can make sure nobody faces it alone. Every donation to Lupus UK helps fund research, provide support, and bring hope to thousands of families. 💜
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