🚀 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…

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…

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

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

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

🇨🇳 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…

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

Watch the insightful EJP RD - European Joint Programme on Rare Diseases 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

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-…

📢 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…

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 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…

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…

📺 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…

▶️ 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

💡Interesting webinar coming up on Congenital Diaphragmatic Hernia!

📅 December 11th, 2023 - 16.00-17.30 CET

Zoom meeting ID: 956 6718 0587
Passcode: 796035

🚨Don't miss out! Engage with industry experts in EJP RD - European Joint Programme on Rare Diseases 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…

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…

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.

UPCOMING October 19th: ERICA WP5 Educational Webinar 3:“Bridging the gap between promising preclinical data and a successful clinical trial”. Registration and info: erica-rd.eu/event/wp5-educ…