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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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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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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.

Friday 10th March 2023

SRUK Research Sheds Light on the Effect of Calcinosis on Patients

Calcinosis is often a debilitating and painful symptom of systemic sclerosis. Last winter, SRUK led a piece of research in partnership with Professor Ariane Herrick, which aimed to build our understanding of the effect of calcinosis on people with scleroderma. We are thrilled to announce that the findings, which our community contributed to, have been published in the journal ‘Rheumatology.’ Read on to find out more about what we learned!

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Wednesday 8th March 2023

Shadow Business Minister Seema Malhotra MP Backs SRUK's Calls for Energy Help

Ahead of the Chancellor’s Spring Budget and statement on 15th March we are delighted that Shadow Business Minister and MP for Feltham and Heston, Seema Malhotra, has joined our campaign to keep heating affordable for those living with Raynaud’s. SRUK is calling for government action after finding that many people with Raynaud’s, who typically rely on their heating to prevent painful attacks, are struggling with the high cost of energy.

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Wednesday 8th February 2023

STAR turns 1! Here’s what we learned from the Symptom Tracking App for Raynaud’s in 2022

January 2023 marked the 1st Anniversary of the SRUK STAR App. The data contained within the app helps facilitate research into Raynaud’s, allowing us to learn more about the condition and how it affects our community. Read on to find out more about the STAR App and what your data has shown us so far!

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Wednesday 1st February 2023

Raynaud's Awareness Month 2023

SRUK calls on public to write to their MP to help keep heating affordable for people with Raynaud's

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Monday 5th December 2022

The MINIMISE-Pilot study: seeking to minimise disease progression in limited scleroderma

Do you have limited systemic sclerosis and live in the UK? Read on to find out how you could take part in a clinical trial of a treatment for the condition.

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Tuesday 29th November 2022

New study could help find a treatment for scleroderma-related fibrosis

Do you have diffuse systemic sclerosis and live in the UK? Read on to find out how you could take part in a new study which could inform a clinical trial of a new treatment!

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Monday 21st November 2022

Treating Fibrosis in Scleroderma: SRUK-funded study lays groundwork for potential new treatment for scleroderma-related skin fibrosis

A recently completed study funded by SRUK in 2018, led by Professor Richard Stratton at the Royal Free Hospital, has laid the groundwork for a potential new treatment for scleroderma-related skin fibrosis, which could enable effective and painless treatment of fibrosis in people living with scleroderma.

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Thursday 17th November 2022

PEOPLE WITH RAYNAUD’S ONCE AGAIN IGNORED BY GOVERNMENT, SAYS SRUK

Scleroderma and Raynaud’s UK (SRUK) has expressed its disappointment that people with Raynaud’s have been ignored once again by the government.

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Wednesday 16th November 2022

Joy's Story

“I’m terrified of the weather getting colder as anything below 20 degrees in the house triggers a Raynaud’s attack and I feel very unwell with it.” Joy shares her fears of painful Raynaud’s attacks this winter

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Tuesday 15th November 2022

Helen Lewis's Story

“My Raynaud’s has definitely gotten worse this year. I used to have an attack a couple of times a week, particularly if I was outside in the cold, but now it happens every day, even in my own house.”

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