ERN RARE-LIVER

🎄✨ Happy Holidays (or Frohes Fest) from ERN RARE-LIVER! ✨🎄 As we wrap up another year of collaboration and progress, we want to take a moment to thank our members and partners for their dedication and support. Together, we’ve made incredible strides in advancing the understanding and treatment of rare liver diseases. This holiday season, we celebrate the connections we've built and the hope we bring to patients and families around the world. Let’s continue to make a difference together in 2025! Wishing you and your loved ones a joyful holiday season and a new year filled with health, happiness, and success. Warm regards from the ERN RARE-LIVER Office Team #HappyHolidays #RareLiver #Collaboration #HealthcareInnovation

📢 Mark your calendars for the next ERN RARE-LIVER Webinar on January 28, 2025, at 5 PM CET! Join us for an in-depth discussion on Hemochromatosis: Update on Diagnosis and Patient Management Based on EASL Guidelines, presented by world-renowned experts: 👩🏫 Speakers: Prof. Heinz Zoller, Medical University of Innsbruck, Chair of the EASL CPG on Hemochromatosis Prof. Elena Corradini, University of Modena and Reggio Emilia, EASL CPG Panelist 🎤 Chair: Prof. Antonello Pietrangelo, University of Modena, ERN RARE-LIVER Hemochromatosis Working Group Lead This webinar will explore: ✅ Genetic and environmental factors influencing Hemochromatosis ✅ Advances in non-invasive diagnostics like MRI ✅ Best practices for managing iron overload to prevent complications Whether you're a healthcare professional, researcher, or patient advocate, this session offers valuable insights into improving care for individuals with Hemochromatosis. 🔗 more information on our website: https://lnkd.in/eHD_cBgb #Webinar #Healthcare #Hemochromatosis #LiverHealth #RareDiseases

📹 CONTRACEPTION & FERTILITY IN RARE LIVER DISEASES 👏 This ERN RARE-LIVER Webinar TODAY on 17 December 2024 at 5pm (CET) will be a collaboration with the ERN RARE-LIVER Transition, Pregnancy and Youth Panel groups 🔗 Please use this link to join: https://lnkd.in/dw_94YhS

📸 Pictures from our Scientific Officer Dr. Ramien on day 2 of the ERICA ERN Research Conference in beautiful Udine! 🌍 ERICA promotes research across all 24 ERNs, aiming to provide resources, support and harmonize efforts to boost research in rare diseases in Europe. 📰 The day started with an update on ERICA‘s activities and great poster pitches. 🙏 Thank you MetabERN for hosting! #RareDiseaseResearch #ERICAConference #ERNs #ResearchCollaboration #MetabERN #ScientificInnovation #RareDiseases #Udine2024 #PosterPitches #ResearchNetworking #ScientificCommunity #RareDiseaseSupport #EuropeanResearch #Day2Highlights

Today marks the inaugural Wilson Disease Awareness Day, a global effort to recognize the legacy of Dr. Samuel Alexander Kinnier Wilson (Dec 6, 1877 – May 12, 1937), the neurologist whose research in 1911 unraveled the mystery behind this rare genetic disease. Wilson disease can mimic liver disease, neurological disorders, or psychiatric illnesses, making it challenging to diagnose. Dr. Wilson’s work, and subsequent discoveries about copper’s role and treatments like penicillamine, have transformed the lives of many patients. On this day, we honor Dr. Wilson, the researchers, healthcare professionals, and all those living with or supporting someone with Wilson disease. Let’s celebrate by raising awareness: 📅 December 6 📸 Post a photo making a “W” sign for Wilson disease and share your connection. 🏷️ Use the hashtags: #WilsonDiseaseAwarenessDay #WilsonDisease #WilsonDiseaseAwareness #WilsonDiseaseAssociation Together, we can support ongoing research and create a brighter future for Wilson disease patients worldwide. 💙

🚑 Improving Transition of Care The ERN RARE-LIVER team has developed a new Transition of Healthcare Template to enhance communication and streamline the transfer of information between paediatric and adult services. This tool is designed to ensure smoother, patient-centered transitions of care. 📄 Access the template here: https://lnkd.in/eCuPSQJv 💡 We encourage clinics to adapt this resource to meet their specific needs and processes. Your feedback is invaluable to help us refine and improve this template! 📝 Provide your input here: https://lnkd.in/eNxMFkya #RareDiseases #HealthcareInnovation #TransitionCare #PatientSupport

📢 New Insights on Porto-Sinusoidal Vascular Liver Disorder (PSVD) and Prognosis 🏢 A recent multi-centre study, including contributions from several ERN Rare Liver centres, has provided important findings on the long-term outcomes of Porto-sinusoidal vascular liver disorder (PSVD). This rare liver condition, often accompanied by portal hypertension, can lead to serious complications and impact life expectancy. In the largest cohort of PSVD patients studied to date, researchers identified key factors linked to poorer outcomes, including ascites presence, age, and levels of bilirubin, albumin, and creatinine. 🔍Leveraging these findings, a predictive nomogram was developed, offering a powerful tool to forecast prognosis with accuracy and aiding in personalised care strategies. These insights mark a significant advancement in understanding and managing PSVD. 🔗 You can read more scientific news on our website here: https://lnkd.in/ezgVX835 #PSVD #LiverDisease #ERNRARELIVER #MedicalResearch #Hepatology #PredictiveMedicine #PatientCare

🌟 ERN RARE-LIVER is growing! 🌟 We are delighted to announce the addition of five new Collaborative Partners to our network: ◾ Medical University of Innsbruck (Austria) ◾ Ukrainian Centre of Maternity and Childhood (Ukraine) ◾ University of Florence - Clinical Gastroenterology Careggi (Italy) ◾ University Hospital Brussels (Belgium) ◾ Marques de Valdecilla University Hospital, Santander (Spain) This expansion strengthens our mission to advance care for rare liver diseases through international collaboration and expertise. 🌍 Welcome to the network! 🎉 #ERNRARELIVER #Collaboration #HealthcareLeadership

The release of CPMS 2.0 has been rescheduled to November-December 2024! Some key updates: ✅ A redesigned CPMS webpage will highlight the latest changes 🎥 New CPMS Live Discussions to enhance engagement 📅 Online training dates for CPMS 2.0 will be published soon We’re also thrilled to welcome four new CPMS Helpdesk Members: ▫ Valeria Perez Campuzano, Hospital Clínic de Barcelona (Spain) ▫ Salvatore Fasano, Hospital Beaujon Paris (France) ▫ Eliezer Zahra Bianco, Mater Dei Hospital (Malta) ▫ Mikkel Malham, Rigshospitalet University of Copenhagen (Denmark) With our existing members—Marcial Sebode, Katharina Moll, Ida Schregel, Nagham Issa, and Jemina Schrodt—the Helpdesk team is now complete. 📌 Join us at the January Members Meeting, where the CPMS Helpdesk will provide in-person support and answer your CPMS 2.0 questions. Let’s make this transition a success together! 🌟 #ERNRARELIVER #CPMS2.0 #Collaboration

Upcoming Webinar: Contraception & Fertility in Rare Liver Diseases 📅 Date: 17 December 2024 ⏰ Time: 5 PM (CET) Key topics: 🔹 Best contraception options for liver disease patients 🔹 Preparing for pregnancy when facing rare liver conditions Speakers: 🎤 Langeza Saleh (Erasmus MC) 🎤 Teresa Antonini (Hôpital de la Croix-Rousse) Chairs: Willy Visser & Leona Dold Learn more here: bit.ly/3XYPcRk #ERNRARELIVER #RareDiseases #MedicalWebinars #PatientwWebinar