News

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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Tuesday 20th September 2022

From cancer to autoimmunity: Could CAR T cell therapy cure scleroderma?

CAR T cells are an exciting and emerging therapy which have been used to treat certain cancers, giving hope to those for whom no other treatments have worked. A recent study carried out in Germany which studied patients with lupus suggests that this therapy could be of use in treating a host of autoimmune conditions including scleroderma.

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Wednesday 14th September 2022

Oral and Dental Problems in Scleroderma: New SRUK-Funded Research Aims to Improve Pathways to Oral Care

Exciting new research run by Professor Liz Walker at the University of Hull and the University of Leeds is aiming to improve oral and dental outcomes for people living with scleroderma, by improving pathways to oral care. You can now get involved in the research team’s study by filling out their short survey about your perspectives on dental and oral care in scleroderma. Find the link on this page!

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Friday 9th September 2022

Evusheld Survey: New treatment to prevent COVID-19 infection in people with poor immune systems

Do you have scleroderma and have a weakened immune system? Would you like to have your say on whether a treatment which can prevent COVID-19 infection is made available to those who have poor immune responses in response to COVID-19 vaccination? Complete our short survey to inform our response to a NICE consultation on whether this treatment should be authorised for use.

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Wednesday 7th September 2022

Helping demystify multi-organ fibrosis: The DEMISTIFI study

Would you like to find out more about a new study that aims to improve how we understand and treat fibrosis?

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Friday 17th September 2021

2021 Virtual Conference Round-Up

A series of talks took place throughout the day, covering areas of research funded by SRUK, advice on symptom management, and discussions about the future. This article offers a brief overview of each talk as a taster, and in the coming months they will be made available online.

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Thursday 16th September 2021

Living with lung disease: Georgina's story

September is Pulmonary Fibrosis Awareness Month. Pulmonary fibrosis (PF) is also known as interstitial lung disease (ILD) and is the most common form of lung involvement in SSc. This can occur at any time, although early detection often leads to much better outcomes. This is Georgina’s story of living with lung disease, which has a dramatic impact upon her life.

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Wednesday 1st September 2021

The OCTAVE Study: Scaling up our understanding of vaccine effectiveness in people living with autoimmune conditions

OCTAVE study reveals how effective COVID-19 vaccinations are in immunocompromised participants

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Tuesday 29th September 2020

SRUK’s co-funded project with World Scleroderma Foundation seeking to improve the Combined Response Index in SSc Score.

An important part of participating in a project such as this is ensuring that you understand how the collected data will be used and why community input is so valuable and fundamentally vital.

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Thursday 24th September 2020

Exploring Acupuncture

Acupuncture is an alternative treatment that comes from ancient, Chinese medicine. An acupuncturist inserts fine needles upon specific points of the body, with the aim of stimulating and balancing the flow of energy. There is some evidence that acupuncture could help to alleviate the symptoms of both Raynaud’s and scleroderma.

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