🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Guidance on Data Protection Impact Assessment responsibilities when setting up and conducting a clinical trial has now been published by the National Clinical Trials Oversight Group.

🌟 We’re proud to announce that EURORDIS, ERDERA and FH Europe are supporting partners of the World Orphan Drug Congress 2025! 🌟 🔗 Secure your spot: buff.ly/Mc8H8ky #WODC #WorldOrphanDrugCongress #OrphanDrugs #RareDiseases #PatientAdvocacy

Have you heard about European Rare Disease Research Alliance (ERDERA)? Focused on faster diagnoses, advancing treatments, and transforming lives. We're proud to be a partner - it's a game-changer for over 30M people with rare disease across Europe! 🌍 erdera.org

📢 Upcoming WP4 Event! The ERN BOND Pregnancy Survey Hybrid Meeting is on Sep 16th, 2025, at the Imagine Institute in Paris. The event will focus on developing guidelines for the care of pregnant women and fetuses with a rare bone disease. Stay tuned for more info!

🔷 30 July is MSD World Day—raising awareness for Multiple Sulfatase Deficiency. Dr. Lars Schlotawa, with support from #REMEDi4ALL, is leading a small molecule #DrugRepurposing trial that could benefit the MSD community. ➡️ Learn more: loom.ly/4vsL0hU #RareDiseases #MSD

Calling Patient Partners who do their own research! With all the information online, it can be difficult to know what is trustworthy or credible content. So, we created the resource "Fact vs. Fiction: Helping you sift through online information." 👉 bit.ly/4lTe781

Today!

Are you a patient/community organisation or PPI contributor looking to host a PPI event for the #PPIFestival2025 in October? Check out this Festival Fund via PPI Ignite Network @ University of Galway !

8 in 10 people living with rare diseases are also living with some form of disability. However, official recognition of these disabilities is deeply inconsistent, exposing a consistent pattern of structural exclusion. Learn more 👉 go.eurordis.org/FD9tAf

📢 Exciting news — #ERDERA's Networking Support Scheme is now open for applications! 👉If you are working to advance research in rare diseases or rare cancers, this could be the funding opportunity you're looking for! 🔗 loom.ly/CwIvcvM 🔁 Repost to help share this info!

If you’ve been thinking about strengthening the way you work with patients – now’s the time to take that first step! 🗓️ September 17, 2025 🌐 Online | Interactive | 14:00–18:00 CEST 🔗 Register here: bit.ly/3TPyuXz 📢 Limited spots remaining – don’t miss your chance!

Stay up to date on the latest news about PPI with the midsummer newsletter. Highlights include our National PPI Festival 2025 announcement, anew blogs and videos by PPI contributors and funding opportunities for researchers. Read the full newsletter here: tinyurl.com/4jn48fcc

🖥️We’ve developed 10 free eLearning courses providing family carers with practical guidance and essential information on key aspects of caring. Each includes a clear intro and overview - and they’re available anytime, so you can learn at your own pace. 🔗familycarers.ie/carer-supports…

The Black Pearl Scientific Award, in partnership with Orphanet, recognises a researcher who represents: 🔬 Breakthroughs in research 🌍 Leadership in collaboration 👥 Meaningful patient engagement 📣 Advocacy & awareness beyond the lab Nominate now! 👇

👀 Limited free passes available for patient advocates and members of patient group organisations for the #WorldOrphanDrugCongress! 👀 Apply for one of our limited free passes here: buff.ly/48EcvJD #WODC #OrphanDrugs #RareDiseases #Healthcare #PatientAdvocacy

🎓Since launch, the REMEDi4ALL Digital Academy has become a go-to resource for the drug repurposing community: 📘10 modules 🧠200+ topics 🌍170+ learners from 50+ countries 🔗 loom.ly/IeBJ9No

📢 FAIR Training 2025 is open - limited spots, register now! #ERDERA #RareDiseases #EU4Health

Join us for our PPI Facilitation Skills Shared Learning Group on Monday, 11th August 12:30-1:30pm. Come, connect with others, share experiences and learn from each other on facilitating PPI groups. Everyone is welcome! To register: tinyurl.com/yecse57v

Feeling left out because the research surveys are for everyone else? We see you, healthcare professionals! This one is just for you! 👇 Our friends in UCC are conducting a brief survey to understand how digital endpoints and PROMs are utilized: surveymonkey.com/r/MK5Q8F7

What does this mean for people with rare lung disease? Better options and better care! 👏 A huge congrats to our co-lead, Prof Cormac McCarthy, and the entire expert team for their groundbreaking research. We're proud to see Ireland leading the way in rare lung disease care.