Guidance for FAIR Data Stewards. Read our open-access paper by Philip van Damme et al. in Data Science Journal here: lnkd.in/e3bF6pYq . lnkd.in/egCVCp-V

Beschikbaarheid van data begint bij interoperabiliteit. Op uitnodiging van IHE Nederland ging ik met René de Vries van CGI in gesprek over digitalisering en databeschikbaarheid. Dit leidde tot een drietal publicaties. Deel 3 van…lnkd.in/eYMuq6mX lnkd.in/edJrd3gz

Patiënten met multimorbiditeit (≥ 2 chronische problemen) krijgen veelal veel geneesmiddelen. Kennis over effectiviteit en veiligheid is hierbij beperkt. LEAPfROG ontwikkelt daarom een lerend medicatieveiligheidsysteem. Hoe? In 4 stappen: pharmacoinformaticslab.nl/leapfrog/leren… !

🌟 Exciting Announcement! 📢 We are launching the EJP RD Virtual Platform! 🚀 Join us as we launch this groundbreaking platform, uniting researchers, clinicians, patients, and advocates toward interconnected knowledge of rare diseases. Discover the Portal: vp.ejprarediseases.org

LAST REMAINING PLACES for our FREE #EJPRD ERN workshop on CDH1 related hereditary diffuse type gastric cancer! 📍 Nijmegen, Netherlands 📅12-13 October 2023 🚨Registration deadline: 31 August 2023 ℹ️Registration & more information: ejprarediseases.org/event/ejp-rd-e…

Join the FREE EJP RD - European Joint Programme on Rare Diseases online training on "Item Response Models for Analyzing Assessments in Rare Diseases" 🧬🔍 🗓️ Date: September 29, 2023 💡 Advanced-Level 📝Registration deadline: September 28, 2023 More information: ejprarediseases.org/event/ejp-rd-o…

From October 9th to December 2nd, mentors and educators, experts in the field, will be available online to answer your questions and to support you during your journey in this EJP RD - European Joint Programme on Rare Diseases online course. Take the opportunity to interact with them! ℹ️ futurelearn.com/courses/introd…

Starting today and running through December 2nd, mentors and educators specializing in the field will be accessible online to address your inquiries and provide guidance throughout your participation in the @EJPRareDiseases online course. Join the course! futurelearn.com/courses/introd…

At our special pre-#SCTExpo23 session "Making the most of healthcare data – sharing data across clinical registries," experts will discuss using #SNOMEDCT to support data-sharing #interoperability requirements and #analytics: snomed.org/snomedct-expo

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-…

We are hiring! werkenbij.amsterdamumc.org/en/vacatures/r…

⭐️It's Rare Disease Day! Our latest video "The European Joint Programme on Rare Diseases: Transformative Stories" is out now! 🎥 Join us on a journey of impact as we showcase real testimonies highlighting the incredible work of EJP RD. 🔗 youtu.be/QHhCq_NVg1c

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

PaLaDIn brings together nine organisations with expertise in NMDs, patient advocacy and data science to collaborate to achieve our ambitious goals. Our second goal is to improve and increase PROMs available to the NMD community. For more info bit.ly/3UxsrZ5

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

New article: "Federated learning is not a cure-all for data ethics" out in Nature Machine Intelligence rdcu.be/dBBx3 Led by Marieke Bak with colleagues #VinceMadai #LeoAnthonyCeli MIT Critical Data Georgios Kaissis Ronald Cornet #MennoMaris Daniel Rueckert Alena Buyx

Exciting update for rare disease enthusiasts! 🌟Registration deadline for the Final EJP RD Conference extended to May 22nd, 2024! Join us online on May 27-28, 2024 for engaging sessions on RD research. Check out the agenda and secure your spot today! ℹ️ ejprarediseases.org/ejp-rd-final-c…

🚀 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…

2 key publications for FAIR data: 1 : Getting your DUCs in a row - standardising the representation of Digital Use Conditions nature.com/articles/s4159… 2 : Common conditions of use elements. Atomic concepts for consistent and effective information governance nature.com/articles/s4159…

🚨 Participate in the EJP RD Survey! 🚨 Help us assess the knowledge and impact of Rare Diseases research (data) resources and tools. Your input is vital for guiding future efforts. 🌟 🔗 forms.office.com/e/JyccyPRQ7t #RareDiseases #Research #EJPRD #Survey #ScienceForImpact