Lupus UK
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Latest posts
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Medical and research conference round-up
Lupus UK attends medical and research conferences throughout the year to learn about the latest updates in research and treatment, meet with healthcare professionals, and collaborate with other organisations. Unfortunately, many of these events don’t allow the general public or…
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“Summer Fun – exclusive accessibility” By Maryann
It’s been eight years since I’ve attended an outdoor festival. Once upon a time in Cokerland, the party people of the place had an understanding; April was for arrangements. Blossom on trees signalled t’was summer schedule setting season. Messages would be flying from chat to…
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The AIM Study: Help Researchers Plan It Well
Researchers are not asking people to take part in the AIM study yet. They would instead love your feedback on how to find and approach people who might be suitable to take part in future, and how samples and health information should be used. Express Interest What is the AIM…
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Autoimmune diseases, ketogenic and very-low carbohydrate diets
A research team from the University of Nottingham want to understand the experiences of people who have an autoimmune disease and have tried a ketogenic, carnivore or other very-low carb diet. This includes how people implement these diets, and if they report changes in their…
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The SMC approves obinutuzumab to treat lupus nephritis in Scotland
Lupus UK are really pleased than the SMC have decided that a new treatment, obinutuzumab, can be used to treat some patients with lupus nephritis in the NHS in Scotland. We hope that having another treatment option will help more people affected by lupus nephritis to have better…
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National Consultations: What are they and why do they matter to Lupus UK?
Government consultations are an opportunity for organisations and the public to share evidence, experiences and recommendations before decisions are made. For Lupus UK, they are an important way to ensure that the experiences of people living with lupus are included in policy…
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Share your experience of Lupus UK support for Lupus Awareness Month
Lupus Awareness Month is our annual campaign to raise understanding of lupus and of the support available. This year we would like to share real experiences of that support, so more people know what is there and how to reach it. We are looking for short testimonials about how…
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Two CAR-T trials paused after three deaths: what we know so far
This article includes information about three people dying in clinical trial for CAR-T. We understand this may be difficult for some people to read about, and encourage you to reach out for support if you need it. You can find links to places to find support and information at…
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“The Flow of Lupus” Poem by Bethany
Poetry can be a powerful way to express feelings and experiences that may be difficult to put into words. Bethany has written a poem “The Flow of Lupus” which reflects on the unpredictable nature of living with lupus. The flow of Lupus. As a fast-paced river, I swirled in time.…
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Ricky Chotai Elected as the new Chair of Lupus UK
Following the very sad, recent passing of our Chair, Elaine Holland, the Board has elected Ricky Chotai as the new Chair of Lupus UK. Ricky has been on the Board for four years, most recently as Vice Chair and Acting Chair. Ricky has supported Elaine, the Board and the…