Twitter Beğeni Hilesi

Please complete the first ERNICA/EUPSA which is on the management of total colonic and intestinal aganglionosis! Aim: to understand variation in practice in the management of this most challenging subgroup of children with HD. Here is the link: surveymonkey.com/r/VPG3XRC.

Join the next ERNICA research collaboration webinar: 🖥 Mental health of parents in context of esophageal atresia / tracheoesophageal fistula. 📅 Wed 6 Dec ⌚ 16.00 - 17.00 CET Register here: events.teams.microsoft.com/event/64aa9186…

🚨Don't miss out! Engage with industry experts in @EJPRareDiseases online courses "Diagnosis Rare Diseases: from clinic to research": until Dec 8th "From Lab to Clinic: Translational Research for Rare Diseases": until Dec 2nd Join us and learn from them! ejprarediseases.org/general-inform…

💡Interesting webinar coming up on Congenital Diaphragmatic Hernia! 📅 December 11th, 2023 - 16.00-17.30 CET Zoom meeting ID: 956 6718 0587 Passcode: 796035

▶️ Watch now: The video of the IRDiRC Consortium Assembly Meeting in Montreal is here! Dive into insightful snippets from different committee chairs especially on the benefits of IRDiRC and international collaboration. 🎥youtube.com/watch?v=83h1ex… #RareDiseases

📺 On the 6th of December, the third Quality of Life webinar took place: "Research findings on the mental health of parents in the context of EA/TEF. Recommendations for digitalised psychological support". ▶ Check out the recording of the webinar here: youtube.com/watch?v=h01aiv…

Join online the EJP RD - EFPIA Webinar on "Real-World Data, Machine Learning, and Deep Analytics in Rare Diseases." 🗓️ Jan 26, 2024 👥Featuring insights from industry expert Marc Van Dijk and EMA's Luis Pinheiro. ℹ️ejprarediseases.org/event/training…

Join us in our upcoming research collaboration webinar: ‘’Patient-Reported Outcome Measures and their Application in Recent Pediatric Surgical Research''. 📆 Wednesday 7th February 2024 ⌚ 16.00 - 17.00 CET Register here: events.teams.microsoft.com/event/faee8c8b…

📢 Read now (open access) the IRDiRC paper, "Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community". Dive into the latest insights from the IRDiRC Task Force on lessons learned and emerging trends in drug repurposing. 🔗frontiersin.org/articles/10.33…

Exciting News! 🌐 The EJP RD Final Conference is set to be held from May 27th to May 28th, 2024 in Bari, Italy. Mark your calendars! 🗓️ Registration is open until March 31st, 2024. Stay tuned for the detailed agenda ℹ️ ejprarediseases.org/unlocking-the-…

Watch the insightful @EJPRareDiseases interview with Veronica Popa, a patient expert, as she delves into the subject of patient engagement in pre-clinical therapy development, the challenges, and the impact of EJP RD funding ▶️youtu.be/n1DSTLwTnuM

To mark Rare Disease Day, EJP RD is launching the @ejprarediseases dashboard! 🚀 Explore and visualize all funded projects from previous Joint Transnational Calls and Networking Support Scheme calls. 📊Discover budgets, abstracts, and more! 🔗 funded-projects.ejprarediseases.org

🇨🇳 IRDiRC is co-hosting the Chinese Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference in Shanghai on May 23-25, 2024. Early bird tickets available until March 30th, 2024! irdirc.org/join-the-chine…

Sarah Weckhuysen and her European consortium are advancing treatments for severe neurodevelopmental disorders. Their collaborative efforts showcase the power of teamwork in driving innovation! ▶️Watch her interview: youtu.be/-fO16UAX9BQ

Join an ERN eUROGEN & ERNICA webinar supported by EUROPEAN PAEDIATRIC SURGEONS’ ASSOCIATION and ARM-Net: 🖥 Gynaecological Issues in Patients with Anorectal Malformation 👥 Lesley Breech & Alejandra Vilanova-Sánchez 📅 Wed 20 Mar, 18:00 CET 🔗 bit.ly/ERNeUROGEN20Ma… #UroSoMe #PedUro #SoMe4PedSurg

Join this ERN eUROGEN & ERNICA webinar supported by EUROPEAN PAEDIATRIC SURGEONS’ ASSOCIATION & ARM-Net: 🖥 ARM & Sexuality 👥 Stefano Eleuteri Sapienza Università di Roma & Marieke Witvliet Utrecht University 📅 Wednesday 24 April, 18:00 CET 🔗 bit.ly/ERNeUROGEN24Ap… #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg

Watch our new interview featuring Johan De Graaf, a Patient Expert. Johan highlights the important role of patients in research, emphasizing significant changes in the past years. ▶️Watch the full video here: youtube.com/watch?v=sADAC3…

🚀 Our third EJP RD MOOC on "Health Data Ethics & Regulatory Frameworks in Rare Disease Research" is launching today! Join us for an enriching learning experience with expert educators on hand to address your queries. 🔗 futurelearn.com/courses/health…

KEKS, the German member of EAT (part of the ERNICA ePAG) celebrates its 40th anniversary. On this occasion, the first International Esophageal Atresia Patient Journey Symposium "BESIDE SURGERY" will take place in Berlin. keks.org/event/erstes-i…

🚀 The @EJPRareDiseases course "Innovative Therapies and Personalized Medicine for Rare Diseases" is live! 🌟 Explore cutting-edge advancements in gene therapy, regenerative medicine, and beyond. Be a part of the revolution in RD treatment! Enroll now: futurelearn.com/courses/innova…