Last day to register for online attendance!
Registration, agenda, and more information here: ejprarediseases.org/event/ejp-rd-f…

Our latest online course provides the tools and insights you need to understand the world of health data and make a significant impact. Watch the newest trailer for the course here: youtu.be/PxkP6mlFfAk
Enroll here: futurelearn.com/courses/health…

Explore the final installment of our intermediate course series: 'Key Solutions to Model Longitudinal Natural History Data with Application in Ataxia Diseases.'
youtu.be/wr8Sx0vpXeQ
More on the lectures in the series ejprarediseases.org/clinical-trial…

Daria Julkowska, the coordinator of the European Joint Programme on Rare Diseases, as she pitches our poster at the ECRD event today! 🌟 #ECRD2024

Check out the #ECRD2024 comic strip showcasing major milestones from the 1st ECRD to today and beyond! 🌟 At labor #7, we celebrate the launch of EJP RD in 2019, marking a major step forward in unifying and accelerating rare disease research
download2.eurordis.org/ecrd/2024/ecrd…

Today we release our latest online course on 'Interim Analysis, Adaptations, and Master Protocols'!
In this lecture, we will focus on the role of interim analysis to react to new data emerging from inside and outside the trial.
Watch the course here: youtu.be/_O8qJ5m2ytU

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…

Exciting update for rare disease enthusiasts! 🌟Registration deadline for the Final EJP RD Conference extended to May 22nd, 2024! Join us on online 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…

⏳ Only 3 days left to apply! Join IRDiRC's Interdisciplinary Scientific Committee and be part of groundbreaking projects! 🚀 4 positions available starting May. Seeking diverse experts, especially from Middle East, Africa, North/South America.
More info: irdirc.org/ongoing-call-f…

Alessandro Prigione, coordinator of CureMILS, sheds light on their research into #LeighSyndrome & highlights the crucial role of global collaboration in advancing rare disease treatments. Check out the interview!
🔗youtu.be/4YzoFTq6K0w

We're thrilled to announce the release of our 2nd intermediate course: 'Bayesian Thinking and Methods' 📚 by Prof. Emmanuel Lesaffre. Dive into the world of Bayesian analysis and enhance your statistical toolkit!
youtube.com/watch?v=6TtZPd…

EJP RD experts are fine-tuning the strategy for the Virtual Platform's next developments and exploitation during the Pillar 2 Annual Retreat at the Istituto Superiore di Sanità in Rome, Italy!

🌍 Join the mission to advance rare diseases research! IRDiRC is seeking new members for its Regulatory Scientific Committee (RSC). If you're from Africa, Australasia, or South America, apply by April 30, 2024. Details here: ejprarediseases.org/irdirc-nominat…

The last EJP RD Pillar 2 Annual Retreat has started in Rome, Italy! 🇮🇹

Did you know that alongside all planned topic and networking sessions, #ECRD 2024 will also be full of surprises! From the keynote speaker to the closing session, the #ECRD experience will be full of twists and turns!
Secure your space today! go.eurordis.org/AkLw08
EURORDIS-Rare Diseases Europe

EURORDIS (EURORDIS-Rare Diseases Europe) are thrilled to inform you that the ON-DEMAND CEREMONY of the 13th EURORDIS Black Pearl Awards is now available.
More information: ejprarediseases.org/13th-eurordis-…

The EJP RD intermediate courses series on statistical methods for rare diseases clinical trials has kicked off today! 🧑‍🏫 Dive into the first captivating topic, 'Key Statistical Principles and Important Study Designs' by Prof. Geert Molenberghs.
▶️ youtube.com/watch?v=7uLBqa…

🌟 Celebrating the incredible women who drive progress in #RareDiseases research! Happy International Women's Day from EJP RD! 🎉👩‍🔬

🌐 Exciting news! 📚 The latest IRDiRC publication on 'Advancing Diagnosis and Research for Rare Genetic Diseases in Indigenous Peoples' is out on nature.com. Let's bridge the gap in healthcare equity for Indigenous communities.
Read here: nature.com/articles/s4158…

#ECRD2024 will be available in 12 launguages! 🗣️ The conference will feature closed captioning in multiple languages to facilitate full participation between all our attendees!
✅ List of available languages available here: go.eurordis.org/hVPVPA #ActRare2024 #EU2024BE