ERN eUROGEN @ERN_eUROGEN
Improving diagnosis, treatment & care for rare urogenital diseases & complex conditions needing highly specialised surgery. Funded by the EU. linktr.ee/ERN_eUROGEN Across the EU/EEA & beyond... Joined August 2017-
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TONIGHT! Join a @ERN_eUROGEN & @ernica_ern webinar supported by @EupsaSurgeons & ARM-Net: 🖥 ARM & Sexuality 👥 Stefano Eleuteri @SapienzaRoma & Marieke Witvliet @UniUtrecht 📅 Wed 24 April, 18:00 CET 🔗 bit.ly/ERNeUROGEN24Ap… #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg
📚📘 It's #WorldBookDay! 📘📚 So why not buy a copy of @ERN_eUROGEN's book Rare and Complex Urology, published by Elsevier? sciencedirect.com/book/978032399… ⭐️ #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg #FPMRS #UroOnc
Join this @ERN_eUROGEN & @ernica_ern webinar supported by @EupsaSurgeons & ARM-Net: 🖥 ARM & Sexuality 👥 Stefano Eleuteri @SapienzaRoma & Marieke Witvliet @UniUtrecht 📅 Wednesday 24 April, 18:00 CET 🔗 bit.ly/ERNeUROGEN24Ap… #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg
Watch the @EJPRareDiseases 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 #raredisease enthusiasts! 🌟Registration for the Final #EJPRD Conference has been extended to 22 May 2024! Join online 27-28 May 2024 for engaging sessions on RD research. Check out the agenda and secure your spot today! ℹ️ ejprarediseases.org/ejp-rd-final-c…
🚨 @radboudumc is searching for a new Professor of Paediatric Urology. Interested in this challenging and inspiring position? 🤔 Read more and apply via the link: radboudumc.nl/en/vacancies/1…
📣Register to the ERKNet/EURORDI webinar on Patient Involvement in Guidelines! 🗓 22 April 17:30 - 18:15 CET The presentation will focus on how patients can best contribute in the development phase and how clinicians can encourage patient involvement. bit.ly/3TSB8Lx
Join this @ERN_eUROGEN & @ernica_ern webinar supported by @EupsaSurgeons & ARM-Net: 🖥 ARM & Sexuality 👥 Stefano Eleuteri @SapienzaRoma & Marieke Witvliet @UniUtrecht 📅 Wednesday 24 April, 18:00 CET 🔗 bit.ly/ERNeUROGEN24Ap… #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg
Join this @ERN_eUROGEN & @ernica_ern webinar supported by @EupsaSurgeons & ARM-Net: 🖥 ARM & Sexuality 👥 Stefano Eleuteri @SapienzaRoma & Marieke Witvliet @UniUtrecht 📅 Wednesday 24 April, 18:00 CET 🔗 bit.ly/ERNeUROGEN24Ap… #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg
Join this @ERN_eUROGEN & @ernica_ern webinar supported by @EupsaSurgeons & ARM-Net: 🖥 ARM & Sexuality 👥 Stefano Eleuteri @SapienzaRoma & Marieke Witvliet @UniUtrecht 📅 Wednesday 24 April, 18:00 CET 🔗 bit.ly/ERNeUROGEN24Ap… #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg
TONIGHT! A @ERN_eUROGEN, OMNI-Net Ukraine & @ifsbh webinar supported by @ERNIthaca: 🖥 Spina Bifida Physical Rehabilitation - Points to Know 👥 Gessica Della Bella & Jane Leonard 📅 Thu 18 April @ 1800 CET 🔗 bit.ly/ERNeUROGEN18Ap… #UroSoMe #PedUro #SoMe4PedSurg #SBoD
Join the next @ERN_eUROGEN, OMNI-Net Ukraine & @ifsbh webinar supported by @ERNIthaca: 🖥 Spina Bifida Physical Rehabilitation - Points to Know 👥 Gessica Della Bella & Jane Leonard 📅 Thu 18 April @ 1800 CET 🔗 bit.ly/ERNeUROGEN18Ap… #UroSoMe #PedUro #SoMe4PedSurg #SBoD
Join this @ERN_eUROGEN & @ernica_ern webinar supported by @EupsaSurgeons & ARM-Net: 🖥 ARM & Sexuality 👥 Stefano Eleuteri @SapienzaRoma & Marieke Witvliet @UniUtrecht 📅 Wednesday 24 April, 18:00 CET 🔗 bit.ly/ERNeUROGEN24Ap… #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg
Join the next @ERN_eUROGEN, OMNI-Net Ukraine & @ifsbh webinar supported by @ERNIthaca: 🖥 Spina Bifida Physical Rehabilitation - Points to Know 👥 Gessica Della Bella & Jane Leonard 📅 Thu 18 April @ 1800 CET 🔗 bit.ly/ERNeUROGEN18Ap… #UroSoMe #PedUro #SoMe4PedSurg #SBoD
Join the next @ERN_eUROGEN, OMNI-Net Ukraine & @ifsbh webinar supported by @ERNIthaca: 🖥 Spina Bifida Physical Rehabilitation - Points to Know 👥 Gessica Della Bella & Jane Leonard 📅 Thu 18 April @ 1800 CET 🔗 bit.ly/ERNeUROGEN18Ap… #UroSoMe #PedUro #SoMe4PedSurg #SBoD
Join the next @ERN_eUROGEN, OMNI-Net Ukraine & @ifsbh webinar supported by @ERNIthaca: 🖥 Spina Bifida Physical Rehabilitation - Points to Know 👥 Gessica Della Bella & Jane Leonard 📅 Thu 18 April @ 1800 CET 🔗 bit.ly/ERNeUROGEN18Ap… #UroSoMe #PedUro #SoMe4PedSurg #SBoD
We're very proud to be partnering with @eurordis on the upcoming ECRD on 15 & 16 May 2024! Register now! Members of our network get 15% off with the promo code: ECRD24_15%_Partners Get your tickets now! #ECRD2024 invt.io/1txb3f5jnhy
On #WorldHealthDay, @ERN_eUROGEN stands united in our mission to raise awareness and support for those battling rare urogenital diseases. Join us in advocating for better care and research to improve lives worldwide. #HealthForAll #RareDisease #UroSoMe #SoMe4PedSurg #Urology
ERN eUROGEN is very excited to be developing Clinical Practice Guidelines relating to these inflammatory bladder diseases, which will be crucial for patients and clinicians. #EAU24
ERN eUROGEN is very excited to be developing Clinical Practice Guidelines relating to these inflammatory bladder diseases, which will be crucial for patients and clinicians. #EAU24
🇫🇷 Are you at #EAU24 in Paris? Get your congress off to a great start by coming to the ERN eUROGEN Thematic Session: "Update on rare & complex urology" 📍Friday 5 April, 10:45-12:15 CET in Room S03, Purple Area Level 7.3 #RareDisease #UroSoMe #PedUro #SoMe4PedSurg #FPMRS #UroOnc
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AVAILABLE is the book by @ERN_eUROGEN on "Rare and Complex Urology". Thank you for the invitation to collaborate in the chapter about the management of female urethra stenosis and urinary fistula. @Urologia12
🌟 Exciting Announcement! 🌟 Join @eurordis for a captivating #webinar enhancing Patient Partnership, featuring a unique patient's perspective from the Chair of our Educational Board, Jean-Philippe Plançon. More info here 👇
How can we help improve #PatientPartnership in the #EuropeanReferenceNetworks? Let’s find out together! Join our first Patient Partnership Webinar of 2024! 🔗Register now: go.eurordis.org/4Ui184
🗓️Save the date and join this interesting webinar hosted by @eurordis on 12th March!
How can we help improve #PatientPartnership in the #EuropeanReferenceNetworks? Let’s find out together! Join our first Patient Partnership Webinar of 2024! 🔗Register now: go.eurordis.org/4Ui184
🌍 It's World Lymphedema Day! A crucial time to spotlight #lymphedema, impacting more lives than often recognized. Learn more about our efforts in #pediatric & #primarylymphedema and join us in raising awareness. Dive in👉linktr.ee/vascern #WorldLymphedemaDay #lymphodema
ERN TransplantChild - Newsletter #67 February 2023 - mailchi.mp/ae029ce2944c/t…
Dr. Yadira Bravo, TransplantChild's Medical Advisor, presented this afternoon at the @jardin_EU_JA kick-off meeting the objectives, tasks and first steps of the WP2 Dissemination in which she participates. #JARDIN
🏥 The ERN EURACAN Professorship Programme, starting in 2024, funds short professorships between ERN healthcare providers (HCPs). As a EURACAN HCP, you can apply as a host chair by filling in the form in our bio⬆️ 📆Deadline for application: 31 March 2024
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
Save the Date! Organised by @eurordis and @Orphanet, the conference will bring together participants to build a multi-stakeholder consensus on a comprehensive approach to rare disease policy that can provide a footprint for the next EU legislative cycle. 👉bit.ly/4365Y7C
🤩 @ern_reconnet is happy to take part to the @jardin_EU_JA KoM to shape the future of #ERNs ⭐️This event is organized by the @EU_EESC w the Directorate-General for Health and Food Safety (#DGSANTE) of the @EU_Commission! 🔗 bit.ly/48ehXRz
#Newsletter March is out: With #DiseaseKnowledge on an #algorithm to predict diagnostic success on patients affected by #Dystonia, a participation call on #ataxia, upcoming webinars and events. Read more here: ern-rnd.eu/?mailpoet_rout…
The Paediatric Nephrology Unit, Azienda Ospedale-Università Padova (Italy), in collaboration with the Patients' Association 'Il Sogno di Stefano' (Stefano's Dream), meet children and young people from Padua schools to celebrate World Kidney Day on March 14th. (1/3)
Let's #throwback to these top 5 educational videos. They cover #Marfan Syndrome, #HHT, Vascular #EhlersDanlosSyndrome, #Lymphedema & #PIK3CA gene and related vascular malformations. Don't miss out on the enlightening insights in these videos! Watch now👉bit.ly/m/VASCERN
🌟Meet Jonas Hofstetter: Biostatistician🌟 With a masters in #Statistics & #DataScience and both a bachelors and masters in Psychology, Jonas is involved with the planning and implementation of statistical analyses and serves as a contact person for cooperating researchers. 👥
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
In her video message, Commissioner @SKyriakidesEU stressed the incredible work ERNs have already done, providing hope to people where there doubts and uncertainty. She also stressed the importance of the Joint Action and collaboration to serve our community going forward. 🤝
#JARDIN KoM session 1 at @EU_EESC conference: setting the scene of #ERNs integration @EU_Health @EU_HaDEA
The importance of a European Action Plan on rare diseases cannot be overstated! 👏
We aim for a comprehensive EU action plan on rare diseases by 2030, ensuring equal access to diagnosis, treatment & holistic care for all patients. Both MSs & civil society are eager for progress, so we must keep joining forces on this. 💬 At Conference: Rare Diseases in the 🇪🇺
On #InternationalWomensDay, we honour the women of VASCERN who are at the forefront of rare vascular disease care and advocacy. Your work gives hope to many. To all the brave women living with these conditions, your resilience inspires us all! #IWD2024 #RareDiseases