Tuesday 19th December 2023

The Mouth in Scleroderma - Tools to Help Dentists Better Understand Your Condition

In 2021 SRUK funded a research project led by Professor Liz Walker, based at the University of Hull, entitled 'Scleroderma in the Mouth: Improving Pathways to Care'. The project focusses on improving oral and dental care in Scleroderma to help improve quality of life. The team have recently produced some useful materials to foster greater awareness of the oral manifestations of Scleroderma amongst dentists. Read on to access a video and information card which you can show to your dentist to help them learn more about your condition and how it affects your oral health.

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Monday 18th December 2023

Time to move on from 'Doctor Knows Best'

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

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Monday 18th December 2023

EULAR publish new recommendations for non-pharmacological management in Systemic Sclerosis

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!

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Tuesday 28th November 2023

Sharing Data to Improve Lives: The SRUK Patient Registry Survey

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.

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Wednesday 22nd November 2023

SRUK's response to the Autumn Statement

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.

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Tuesday 21st November 2023

Government must expand Cost of Living Payments to protect health of those living with Raynaud's Phenomenon

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.

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Wednesday 11th October 2023

New hope for Raynaud’s treatments after researchers confirm genetic causes

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

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Tuesday 3rd October 2023

The British Society for Rheumatology Annual Conference 2023: Research Round-Up

Earlier in the year we attended the British Society for Rheumatology Annual Conference, joining over 2,300 attendees which included leading doctors, nurses, and healthcare professionals working in the field. The conference was a fantastic opportunity to raise awareness of Scleroderma and Raynaud’s, and we got the chance to hear about some of the latest research aiming to improve our understanding of the conditions and open new avenues of care. Read on to learn more about some of the exciting projects we heard about at the conference!

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Friday 15th September 2023

The Perfect Patient Information Journey in Scleroderma

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.

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Wednesday 30th August 2023

MELODY: Study finds immunosuppressed people make antibodies after COVID-19 vaccination

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!

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