News

‘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

The School of Medicine are looking for volunteers for their Long-term health conditions project, which offers students an opportunity to learn by experience about what is like to have, or to care for someone who has, a chronic illness or disability. Each volunteer is paired with three 1st year medical students who will meet with

This Winter season Scleroderma & Raynaud’s UK (SRUK) is calling on you to spare just one minute of your time to help unlock potential breakthroughs in diagnosis and treatment for Raynaud’s and other debilitating autoimmune conditions like scleroderma, lupus and vasculitis. The ask is simple, take SRUK’s online symptom test to find out if you

What does good care and treatment for rare disease mean to you? The rare disease quality statement project is asking the rare disease community to complete our survey, to develop a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases. We need your support to