Author name: Sjögren's UK

We’re supporting the RAISE study, a national research project funded by the NIHR, which is looking into how the NHS can better support people with Rare Autoimmune Rheumatic Diseases (RAIRDs) like Sjögren’s. Researchers have already spoken with patients in various focus groups, and they’re now launching a UK-wide survey to better understand what kind of support patients want and need. […]

The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has released the results of a major UK-wide survey, Rare Care Matters, highlighting long-standing issues in the diagnosis, treatment, and support of people living with rare autoimmune rheumatic diseases (RAIRDs), such as Sjögren’s, Lupus, Scleroderma, Raynaud’s, and Vasculitis The survey, completed by over 1,300 people across the UK, reveals:

We’re pleased to share an opportunity for people living with autoimmune diseases to contribute to important research led by the University of Cambridge. The INSPIRE-Flare survey is designed to explore how patients experience disease flares, including what may trigger, prevent, or precede them. This research is patient-led and supported by clinicians, charities, and researchers with

‘My dry eyes and mouth were signs of a devastating disease that mainly strikes women. I’m urging others to seek help as doctors warn a delay can be disastrous’ We were pleased to support journalist Julie Cook in writing her recent piece for the Daily Mail, titled “My dry eyes and mouth were signs of a devastating

Have Your Say: Help Shape Quality Standards for Rare Disease Care RAIRDA’s Rare Disease Quality Statement Project is inviting patients, carers, healthcare professionals, policymakers, and patient organisations to take part in their second survey. This important project aims to define what high-quality, sustainable care, treatment, and management should look like for people living with rare

The 5th Annual Science in Medicine School Teams Prize is now open, a national competition designed to inspire sixth form students to explore how science, technology, and health research can work together to improve lives. We’re encouraging teachers, parents, carers, and supporters to help motivate students to take part in this unique opportunity to step

As Lupus UK celebrates its 35th anniversary, they are reaching out to the lupus community to shape their priorities for the future. They want to hear from people living with lupus, carers, and healthcare professionals about what support and resources are most needed. To gather insights, Lupus UK has launched: Your input will directly influence

Please see links to a publication on the long-term impact of misdiagnoses from Dr Mel Sloan and Prof David D’Cruz’s research team at Cambridge published on Monday which many of you contributed to. Mel, David, and the research team, which includes many patient partners and whose core ethos is to research the topics that YOU

We’re pleased to share an opportunity from NHSWE Musculoskeletal Strategic Network. They are launching an MSK Lived-Experience Group and are looking for individuals with experience of musculoskeletal conditions, such as arthritis or back pain, to join. To introduce the group and its benefits, they are hosting a webinar on Monday, 3rd March, 12:30-13:15 via Microsoft Teams.

This survey asks about your medical relationships, disease symptoms, and health. It should take around 30 minutes to complete (you can pause or stop at any time). We are supporting this study as it will raise awareness about important issues and where more support may be needed, but it is entirely up to you whether