EASL | The Home of Hepatology’s Post

Mark your calendars! 🗓️ Our first Congenital Hyperinsulinism Family Conference of 2025 will be held in Copenhagen, Denmark, from May 8th to 10th. 🎉More information will be coming soon. We are thrilled to be making our way to Denmark this year! 💙 📧 Stay in-the-know about future conferences by signing up for our mailing list at https://lnkd.in/e9gnH5aX 🔗 #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Save the date! We will discuss the featured abstracts from EADV 2024 in the field of psoriatic disease.

Today, 29th April 2024, marks the Undiagnosed Day. The Undiagnosed Day 2024 is a worldwide collaboration between Wilhelm Foundation, Undiagnosed Diseases Network Foundation (UDNF) and the UDNI. According to the Undiagnosed Diseases Network Foundation (UDNF), "an undiagnosed illness is a medical condition with no known cause, even after many tests and visits to different specialists". As reported on their website, "a disease may be difficult to diagnose if it is a rare disease, the symptoms are atypical, the disease has not been discovered or published in the medical literature, or patients are unable to get the appropriate tests or travel to see rare disease specialists". It is estimated that 350 million people live with an undiagnosed disease worldwide. From JARDIN -the Joint Action on Integration of European Reference Networks (ERNs) into National Healthcare Systems- we want to show our #support. #UndiagnosedDay #UndiagnosedDay2024

Have you heard of the European Venous Registry? 👀 We noticed a lack of robust data on deep venous interventions - so our Key Opinion Leaders have been working hard to make this registry happen. ⭐The objective is to improve long-term data collection on the treatments and outcomes of people with deep venous disease. You can add your centre to the registry: https://lnkd.in/ezCan9hP Robert Hinchliffe, Stephen Black, Olivier Hartung, Efthymios (Makis) Avgerinos, Marta Ramirez Ortega, Mert Dumantepe, Baris Ozdemir, Gustaf Tegler, Houman Jalaie, Marie Josee van Rijn

📢 The latest ERN eUROGEN Newsletter is now available! 🌟 Dive into updates on rare disease news, research, upcoming events, webinars, and much more. 📖 Read the full newsletter here: https://lnkd.in/ebpCqk8e #EUfunded #HealthUnion #EU4Health #HealthierTogether #StrongerTogether

Together for Rare Diseases has signed the EURORDIS-Rare Diseases Europe's Open Letter to Future EU Policymakers following the 12th European Conference on Rare Diseases and Orphan Products. ✉️🤝   Our mission clearly aligns with the key statements in the letter to make rare diseases a top priority in future European policies and programs (including earlier, faster and more accurate diagnosis and innovative and needs-led research) through a comprehensive European Action Plan for Rare Diseases, supported by (sustainable) European Reference Networks as a cornerstone of the Rare Disease ecosystem that also include JARDIN Joint Action, Orphanet and #ERDERA (list not exhaustive!) As mentioned in our position statement, we promote transparent governance structures and open dialogue to empower and advance ERN-industry research collaboration: https://lnkd.in/d3dHRAeQ Together, we can build a more inclusive and effective European Health Union. Let's continue to support and advocate for the rare disease community! 💪💚   🔗 Read and sign the full letter here: https://lnkd.in/eWhwSv3R   #RareDiseases #EuropeanActionPlan #ECRD #EuropeanReferenceNetworks #ERN #ActRare2024

Check out our year-end newsletter, HI-lights! 📧 2024 has been a year of tremendous growth for CHI as we continued to expand our programs promoting research, support and education, and awareness - the key pillars of CHI’s work. 💙 Visit https://lnkd.in/eRJAJk93 🔗 to read all about the progress made in HI research, our Family Conferences, how we’ve spread awareness this year, and so much more! 🎆 #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

“Rethinking Rare” – the 8th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation just took place in Berlin. “Rethinking rare” diseases is urgently needed: Comprehensive challenges in research and care are still waiting for innovative solutions and out-of-the box thinking. Working in the field of rare diseases is meaningful and fills me with pride to be able to give a voice to those who are so often forgotten. When you hear many of the fates, reports of pain and the powerlessness that there is no therapy, it fills me with humility to see the strength that people and families affected by rare diseases (have to) display. In many areas, a rethink is necessary, and structures and processes need to be reconsidered. At the same time, we need to think about the future and how to set the course already today for the personalized precision medicine of tomorrow. Together a broad spectrum of rare diseases was covered and the discussion how the medicine of tomorrow can meet the special needs of those affected is so important. Many thanks to Eva Luise und Horst Köhler Stiftung für Menschen mit Seltenen Erkrankungen, Eva Luise Köhler, Chairwoman of the Foundation Council, former German President Prof Dr Horst Köhler, Prof Annette Grüters-Kieslich, Sanna Börgel and all the speakers. #evaluiseköhlerstiftung #rarediseases #selteneerkrankungen #elhks #symposium #rethinkingrare

We are deeply commited to collaboration for changing current paradigmes in evidence generation and assessment in rare diseases

👉 Don’t forget to register here for our ECRD2024 Thought Leader Session, in partnership with EURORDIS-Rare Diseases Europe and Rare Disease Moonshot: https://lnkd.in/edUKkYDQ   🤝 Rare diseases present unique hurdles that necessitate a united front from various stakeholders: patients, researchers, clinicians, industry, and policymakers. During this Thought Leader Session, we will explore the importance of public-private partnerships for rare disease outcomes through best practices examples on how they can drive innovation and advance research.