SRUK Chief Executive says: ‘Time to move on from Doctor Knows Best’ As study finds Patient views not always valued ..read more

EULAR have recently developed new recommendations regarding non-pharmacological management of Systemic Sclerosis. Non-pharmacological management approaches aim to ease disease symptoms and improve quality of life, or help to prevent a patient’s condition from worsening. By working with healthcare professionals and patients, EULAR have published a new set of recommendations, which have the potential to improve the management of Scleroderma and the quality of life of patients. Read on to find out more ..read more

SRUK is developing a Patient Registry, with the aim of improving outcomes for people diagnosed with Scleroderma or Raynaud's. Our Registry will be a secure, anonymous database, containing health information about people living with the conditions. It will be used to improve our understanding of Scleroderma and Raynaud's and how different people are affected over time, to help accelerate research into new and better treatments designed to improve quality of life. Read on to find out what we learned through the SRUK Patient Registry Survey, and how it will help shape our Patient Registry ..read more

Ahead of the Chancellor's Autumn Statement we are calling on the government to expand its Cost of Living Payment criteria to include people living with Raynaud’s Phenomenon ..read more

SRUK asks the Chancellor to consider the impact of changes to disability benefits on people with scleroderma and we renew our call for more support with energy bills for those that need it most ..read more

People with weakened immune systems, including those with Scleroderma, are at increased risk of developing a severe infection after being exposed to Covid-19. Vaccinations and booster doses have been offered to immunosuppressed patients since the roll-out of the NHS vaccination programme in 2020. But how well do they work in people who have weakened immune systems? Read on to hear the exciting findings from the MELODY study ..read more

Scleroderma can be complex and unpredictable, affecting people in many different ways. But what might the scleroderma journey look like? And why is it so important to find out? Working with the Patient information Forum, SRUK has identified this journey and created some new information resources for everyone affected by scleroderma. These materials are designed to reassure people they are not alone, and to help them access reliable information ..read more

A recently completed SRUK-funded research project, led by Dr Peter Worsley at the University of Southampton, has built evidence for the use of non-invasive tools which can accurately measure the health of the skin in Scleroderma. The findings of the project have the potential to drive forward the use of new, non-invasive skin assessment methods, using tools employed in the assessment of other conditions that affect the skin, which could be an important step towards improving the diagnosis and monitoring of the condition ..read more

Researchers have, for the first time, identified two genes that can increase the risk of developing Raynaud’s ..read more

SRUK Calls for greater investment in rare rheumatic disease training as survey finds Rheumatologists can struggle due to lack of education and resource ..read more