News

We are proud to share that our trustee Linda Stone has contributed as an author to a newly published paper: “Embedding patient engagement in the R&D process of a life sciences company through co‑creation with a patient expert R&D board: a case study.” The paper presents a case study of Servier, a life sciences company

We’re pleased to share insights from Spotlight on Sjögren’s, a new international real-world study exploring the lived experiences of 1,155 people with Sjögren’s disease. Developed in collaboration with the patient community and supported by Novartis, the study aims to deepen understanding of the burden of disease, unmet needs, and treatment satisfaction — all from a

Join artist Emma Barnard for a free, all-skills-welcome creative workshop that gives voice, and form, to life with dry mouth. Explore your journey through photography, collage and a behind-the-scenes lab visit, all while connecting with others who truly understand. Date, Time & Location Who Should Attend What We’ll Offer Photography Workshop – Capturing the Invisible

Novartis has reported that both of its pivotal Phase III clinical trials—NEPTUNUS-1 and NEPTUNUS-2—have successfully met their primary endpoint in adults with active Sjögren’s disease. These are the first global Phase III studies to show a statistically significant reduction in disease activity in this patient group. Trial Highlights What This Means for Patients About Ianalumab

Everything You Always Wanted to Know About Clinical Trials (But Were Afraid to Ask) Click here to register To mark World Sjögren’s Day 2025, Sjögren Europe invites you to a unique patient-focused webinar exploring what clinical trials really mean for those living with Sjögren’s Disease. This interactive session will be presentation-free, instead, expect an open,

We’re supporting the RAISE study, a national research project funded by the NIHR, which is looking into how the NHS can better support people with Rare Autoimmune Rheumatic Diseases (RAIRDs) like Sjögren’s. Researchers have already spoken with patients in various focus groups, and they’re now launching a UK-wide survey to better understand what kind of support patients want and need.

The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has released the results of a major UK-wide survey, Rare Care Matters, highlighting long-standing issues in the diagnosis, treatment, and support of people living with rare autoimmune rheumatic diseases (RAIRDs), such as Sjögren’s, Lupus, Scleroderma, Raynaud’s, and Vasculitis The survey, completed by over 1,300 people across the UK, reveals:

We’re pleased to share an opportunity for people living with autoimmune diseases to contribute to important research led by the University of Cambridge. The INSPIRE-Flare survey is designed to explore how patients experience disease flares, including what may trigger, prevent, or precede them. This research is patient-led and supported by clinicians, charities, and researchers with

‘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