NECESSITY Project

Thrilled to share our new article published in #LancetRheumatology: "Treatment modalities of marginal zone lymphoma and overall survival, haematological response, and underlying Sjögren's disease activity: a multicentre, retrospective, observational study" by Rocca, Beydon and collaborators. Lymphoma is the most severe complication affecting patients with Sjogren Disease. Our results demonstrate that a systemic treatment strategy for the lymphoma, rather than local treatment or wait-and-see strategy, reduces the risk of relapse of SjD, underlining the continuum between autoimmunity and lymphoma in this context. This study highlights the need to standardize the management of lymphomas complicating SjD. https://lnkd.in/efSxtD7u Cancer and Autoimmune / Inflammatory diseases FHU CARE Cancer Autoimmunity Immunotherapy Inserm Université Paris-Saclay AP-HP, Assistance Publique - Hôpitaux de Paris The Lancet

Anti-CD40 Therapy in Sjögren's Disease Iscalimab, a CD40 monoclonal antibody, showed + results in treating Sjögren's disease, an autoimmune condition lacking effective therapy. The TWINSS study demonstrated iscalimab's safety/efficacy in a phase 2 trial.

📫 Our July newsletter is out! Read it at https://europa.eu/!v849qr 📅 TWO events to put in your calendar for the autumn - an online masterclass on #DataSharing on 4 Sept - a face-to-face networking and brokerage event for our 2025 calls in Brussels on 12-13 November ✅ Project successes from AMYPAD (on #Alzheimer's disease and #imaging), NECESSITY Project (on the autoimmune condition Sjögren's disease) and imSAVAR on #BreastCancer 👋 We say hi to new IHI project IHI IMPROVE ✍ IHI's Niklas Blomberg and EFPIA's Magda Chlebus teamed up to write a blog on #DataSharing 📗 We present our shiny new brochure on IHI 🎧 And last but not least, we highlight the Vital Transformation podcast recorded at #BIO2024 and featuring Niklas Blomberg Want to receive future issues of the newsletter by mail? Sign up at http://europa.eu/!F7FPYf #IHITransformingHealth #HorizonEU COCIR EFPIA - European Federation of Pharmaceutical Industries and Associations EuropaBio - the European Association for Bioindustries MedTech Europe Vaccines Europe

On #WorldSjögrensDay, find out how our NECESSITY Project has identified three subgroups of #Sjögrens patients, meaning that more personalised and better treatments could be possible 👉 https://europa.eu/!7WnVCF #IHITransformingHealth #EUHealthResearch

#WorldSjögrenDay is crucial for shedding light on Sjogren's disease, an often misunderstood autoimmune disease. This day aims to educate the public and healthcare professionals about the disease's symptoms, challenges, and impacts, which primarily affects moisture-producing glands, causing dry mouth and dry eyes, along with other systemic issues. Increasing awareness is vital for early diagnosis, improving patient outcomes, and fostering research for better treatments and a potential cure. By highlighting personal stories and scientific advancements, World Sjogren's Day is pivotal in supporting those affected and advancing the fight against this chronic condition.   1. #Prevalence: Sjogren's disease affects approximately 0.1% to 0.6% of the population in Europe, with some studies suggesting up to 1% in certain regions. 2. #Gender: Around 90% of Sjogren's disease patients are women, typically diagnosed during middle age. 3. #Age: While it can affect individuals of any age, Sjogren's disease is most commonly diagnosed in people aged 40-60. 4. #Overlap with Other Conditions: About 50% of patients with Sjogren's disease have another autoimmune disease, such as rheumatoid arthritis or lupus. 5. #DiagnosisDelay: On average, it takes about 3-6 years for patients to receive a correct diagnosis after the onset of symptoms, due to the disease's complexity and overlap with other conditions. 6. #Symptoms: The most common symptoms include dry eyes and dry mouth, experienced by nearly all patients, but the disease can also cause fatigue, brain fog, joint pain, and organ involvement. 7. #Complications: Patients with Sjogren's disease have a higher risk of developing lymphoma, with an estimated 5-10% lifetime risk. 8.#QualityofLife: Sjogren's disease significantly impacts the quality of life, with many patients reporting chronic pain, fatigue, and sleep disturbance with significant economic burdens due to loss of productivity. 9. #NoCurrentCure: To this day, no approved treatment is available for Sjögren's disease.   #Sjögren #Disease #Day #July #2024

In honor of World Sjögren’s Day, our partners at the Innovative Health Initiative (IHI) have published an article showcasing the significant progress of the NECESSITY project. This piece explains in simple terms how categorizing Sjogren's patients is a crucial step toward developing more effective treatments for everyone affected by this disease. #SjögrensAwareness #NECESSITYProject #IHI https://lnkd.in/ew5HR46U

The LBAI is hiring! You are looking for a postdoc position in Immunology, to help us understand autoimmunity? This job is for you! Join us for this exciting research adventure in our vibrant city of Brest! Application dealine Sept 15, 2024, please send your CV and letter to [email protected] and [email protected] Interviews of the selected candidates will be organized in October 2024. Find more about the LBAI - B Lymphocytes, Autoimmunity and Immunotherapies - Inserm U1227, our research program and our cutting edge technological platforms: https://lnkd.in/ed8GKMnc Université de Bretagne Occidentale Inserm Inserm Grand Ouest LabEx IGO CHU de Brest Direction Recherche Clinique et Innovation Mayo Clinic Johns Hopkins Medicine Maximilian F. Konig Alvise Berti Università di Trento UniTrento CIBIO European Federation of Immunological Societies Federation of Clinical Immunology Societies (FOCIS) yEFIS Swiss Young Immunologists Society (SYIS) SIICA Hellenic Society of Immunology Young Immunologists group (HSΙ-YI) yBIS - Young Belgian Immunological Society DGFI Young Immunologists SFI Société Française d'Immunologie French Club of Young Immunologists Société Française de Rhumatologie (SFR) Club Rhumatismes et Inflammations CRI Réseau CRI-IMIDIATE SIGNATURE EU NECESSITY Project 3TR Filière de santé FAI2R Postdocs UMCG Vasculitis Foundation Vasculitis Expertise Center Groningen Vasculitis UK BrestLife Anne Kerdi

#patientvoices #testimonial Patient voices come first. "At first, I was always given hope with my sick leaves being repeatedly approved, which included a projected return-to-work date. But one day, I received a letter from the Social Security office informing me that I had been officially declared unable to work due to long term disability. It was a crushing blow to realize that I was now permanently out of work, that I would no longer see my colleagues, and that my social life, as I had known it, was over. Experience of a patient living in #France, highlighting the #social and #moral impact #patients face when living with the debilitating symptoms of #Sjögren's disease.

🚀 Patient Partners!🚀 At the 2024 EULAR - European Alliance of Associations for Rheumatology in Vienna, a survey data has been shared, shedding light on the evolving role of patients in rheumatology research, specifically in the quest for new treatments and outcomes for primary Sjögren’s disease. 🌟 What makes NECESSITY Project initiative truly remarkable? A consortium of 25 partners across academia, industry, and patient associations, all working together to harness the unique insights and expertise of patients. 💪 Discover how our collaborative approach is shaping the future of Sjögren’s disease research and why over 95% of respondents view patient partners as essential research collaborators. Dive into the details and be part of the conversation driving innovation in rheumatology! 🧩🔍 Special thank you to Coralie Bouillot, our amazing patient partner, for her insights and dedication to the project! #EULAR2024 #Rheumatology #SjögrensDisease #PatientPartnerships #InnovativeResearch #HealthcareTransformation 👉 Read more about this exciting initiative and its impactful findings!

For a Professor there are few things more rewarding than seeing their students advance and excel. I am very proud of Sacha E Silva-Saffar, our PhD student, co-supervised by Gaetane Nocturne, PhD who works hard in bringing computational approaches to the study of Sjoegren disease. The project was selected for an oral presentation at one of the most prestigious conferences in rheumatology, EULAR - European Alliance of Associations for Rheumatology. Not only that but he also obtained a very honorable scholarship. Bravo Sacha! I would also like to thank the Université Paris-Saclay for the doctoral scholarship that allowed us to bring this project to life, the NECESSITY Project consortium that adopted us and gave us access to valuable data, Inria Saclay and Lifeware team for hosting both me and Sacha during this transition phase of my career and the wonderful team of #XavierMariette and the rheumatology service of Kremlin Bicêtre for their incredible support and for believing in the force of interdisciplinary research projects.