ProDGNE

Thank you all for coming together for a fantastic #ProDGNEmeeting2024 in Cagliari and online! 📸Dive into some great pictures and moments from the event and stay tuned for more updates! #GNEMyopathy #RareDisease @EJPRareDiseases #JTC2020

✨Season's greetings from all of us at ProDGNE! We are using this time to pause and recharge for a filled 2025 ✨ We wish you a joyous festive season!

How can we create a collaborative ecosystem to advance research in #RareDiseases? We sat with @HorizonMagEU to discuss the impact of #EJPRD, the newly launched @ERDERA_org and the need for strong #PatientPartnerships in Rare Diseases #ResearchImpactEU @eurordis #GNEMyopathy

🚀 Join us for the ERDERA launch event! 🗓️ 28 Oct 2024 ⏰ 14:00-16:15 CET 💻 Online Don't miss insights from top experts & learn how @ERDERA_org is set to change the landscape of rare diseases research! 👉 RSVP here:loom.ly/roZC5QM #RareDiseases @EU_HaDEA

✨ Over the past 5 yrs, #EJPRD has transformed rare disease research and patient care in Europe. 💪 ERDERA now takes the baton to make a difference for 30 million Europeans living with rare diseases. 🔗 Learn more: loom.ly/4djS9eg

ProDGNE is at the 33rd Joint Glycobiology meeting in Hannover! 🇩🇪 Today Carolin Neu from @unimedizinhalle presented the role of GNE and Sialylation in #GNEMyopathy 👏

We are now ERDERA! This new partnership builds on EJPRD achivements to continue advancing diagnosis, prevention, and treatment research for the 30+ million people living with a rare disease in Europe and beyond. 👉 erdera.org

Are you at #SSIEM2024 and interested in learning more about #CDG ? Drop by to meet ProDGNE researcher Mariana Barbosa and see poster 172 on #hyposialylation in #GNEMyopathy👉a #rare adult-onset #muscle disease and Congenital Disorder of Glycosylation prodgne.eu

Throwback to @Michi_Onali, our 2023 Volunteer Awardee, talking about why the Black pearl Awards mean so much to her and her ultra rare disease community! Does somebody in your community deserve recognition? Nominate them now! 👉 go.eurordis.org/Nominate

🚀 Reminder: Our survey on Rare Diseases research tools by EJP RD is live! 🧬🔬 Your insights are vital to improving our resources and shaping the future of rare diseases research. Don't miss out! Take the survey now! 👉 forms.office.com/e/JyccyPRQ7t

🚀 Excited to share the latest article on the European Joint Programme on Rare Diseases: Building the Rare Diseases Research Ecosystem! 🌍📚 Celebrating 5 years of groundbreaking achievements and collaborative efforts. oaepublish.com/articles/rdodj…

Big congrats from all of us at ProDGNE! 🎉 We trust the @lochmullerlab will celebrate in style!

We are back from a fantastic #EJPRD final conference in Bari! Thank you to the @EJPRareDiseases team and @FondazioneBenzi for hosting us in Bari! We look forward to the next #ERDERA chapter! #RareDiseases #GNEMyopathy #EJPRD #JTC2020

We are in Bari at the @EJPRareDiseases final conference. Now @pertusati presenting the participation of ProDGNE in the @eatris mentoring programme

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…

🔜 EJPRD Final conference in Bari 🇮🇹 🗓️27-28 May Agenda: urly.it/3a18z Register by 22 May to join online: ejprarediseases.org/event/ejp-rd-f… ProDGNE is a pre-clinical research project funded in the #EJPRD #JTC2020 to develop a #prodrug for #GNEMyopathy prodgne.eu

Excited to be at the #EJPRD final conference next week to present: 🟣ProDGNE's experience with the @EatrisEric expert mentoring:@pertusati 🟣The impact of patient leadership & guidance in consortium + proposal development:@Michi_Onali 🔜Register by tomorrow to join us online

@eurordis @euro_nmd @Michi_Onali @LochmullerLab @WishartLab @unimedizinhalle @ChemistryCU @genome_gov @wwgnem @yurik00da @pierluigicaboni @pertusati @Glycoimmunolab @DariaJulkowska @SardegnaRs @worldduchenne @TeresinhaEvange @one333 @MarcoSavareseIT @BortolaniSara @antonioatalaia

Thank you all for coming together for a fantastic #ProDGNEmeeting2024 in Cagliari and online! 📸Dive into some great pictures and moments from the event and stay tuned for more updates! #GNEMyopathy #RareDisease @EJPRareDiseases #JTC2020

#ProDGNEmeeting2024 in #Cagliari is still on with a busy session with flash presentations from: @SardegnaRs @MarcoSavareseIT @LochmullerLab Andreas Roos 🇩🇪 James Morewood @cardiffuni Beatriz Pereira @Glycoimmunolab Carolin Neu @unimedizinhalle GNEMyopathy #RareDiseases

#ProDGNEmeeting2024 More talks from: Wenhua Zhu, Huashan Hospital, Fudan University 🇨🇳 presenting the mutational spectrum & preliminary natural history data of #GNEM patients Ivailo Tournev & Teodora Chamova from Alexandrovska University hospital on #GNEM in Bulgaria🇧🇬

We are back for an exciting afternoon session! #ProDGNEmeeting2024 We are delighted to have with us David Wishart from the @WishartLab to present #Metabolomics and Machine Learning for Understanding #GNEMyopathy Wakako Yoshioka, from NCNP🇯🇵 with a talk on the national registry