💥 #DYK that ERN ReCONNET 🇪🇺 will organize its 2⃣nd International Congress!?!?! 🗓️#Savethedate for April 2025 ✍️Registration is OPEN n special fees are available 🔬🧬🧫Abstract submission is also open! 🏃‍♀️Don't miss it, check the link for all ℹ️ n join us 🔗bit.ly/3Rdb3Xf

Do you live with a rare disease and disability? 💬 Take the new #RareBarometer survey and share your experiences to help us drive change. Available in 25 languages until 8 September. ✅ tiny.cc/RB_DailyLife

🚨 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

Dear colleagues, Do not forget to get included in the CyPhy Study that will prospectively look into the UTI rates following pediatric cystoscopy. ESPU

Today is both #TalktoUsDay and #InternationalSelfCareDay. ERN eUROGEN is very aware of the impact of #RareDisease on mental well-being and supports EURORDIS-Rare Diseases Europe in advocating for a new Comprehensive Approach to Mental Health. Read more here: eurordis.org/mental-wellbei…

📆𝐀𝐧𝐧𝐨𝐮𝐧𝐜𝐢𝐧𝐠... 📢📆 ❗️ #Webinar with Jan Degenhardt 📚#HLRCC : Hereditary Leiomyomatosis and Renal Cell Carcinoma 🏘️ Joint initiative of #ERNGenturis & ERN eUROGEN ⚙️Organised by ERA - European Renal Association & ERKNet    𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞: register.gotowebinar.com/register/61415…

Ready to #MakeYourVoiceHeard? Share your experiences with education and your professional life, daily activities, or social support in the #RareBarometer survey to help us advocate for improved rare disease policies and support! 📢 tiny.cc/RB_DailyLife

📢‼️🌳JARDIN launches new website! We are happy to show you the official site of the Joint Action on the Integration of the ERNs into National Healthcare Systems Now, you can discover more about #JARDIN and the #ERNs. Enter now! Visit🌐jardin-ern.eu

Reminder: the EJP RD survey on rare diseases research tools 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

🌳 JARDIN_Joint-Action website is now ONLINE! 🔍 check it out to learn all about this important EU project 🇪🇺 focused on the #ERNs integration on the National Healthcare Systems! 💪 Look forward to our future actions. 📰 reconnet.ern-net.eu/2024/08/02/new…

Check out the new chapter in the #peduro European Association of Urology (EAU) guidelines dealing with #fertility preservation in children and adolescents. Go to uroweb.org/guidelines/pae…

Please Disseminate & Contribute: Cross-Border Access to Paediatric Clinical Trials Survey: erica-rd.eu/please-contrib…

🚨 Somewhere out there are the next stars of the rare disease community and we need your help in finding them! 🚨 Don’t miss your chance to nominate yourself or someone who has made a difference for your community 👉 go.eurordis.org/Nominate

Register and attend the public webinar “Towards a World Health Assembly Resolution on Rare Diseases 2025”, which will take place on 30 August 2024, 14:00-15:30 CET. You can register and find more information here: rarediseasesinternational.org/event/wha-publ…

A Masterclass in Male Urinary Incontinence Surgery will be held on 17 Sep 2024 by ERN eUROGEN's healthcare provider full member, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome (IT). For more information, please email: [email protected]

Great retrospective study with honest outcomes "Median follow-up 14 years; overall reoperation rate 48.2%; risk of redo surgery correlated with #Hypospadias severity with 5- & 15-year reoperation risks at 39.3% & 51.8%, respectively" #bettercare FIRENDO ERN eUROGEN

I am happy to share this new article ⁦@WJUrol⁩ which may lead to reduce the number of unnecessary #urineculture prescribed before a #VCUG ⁦Hôpital Robert-Debré AP-HP⁩ ⁦Université Paris Cité⁩ ⁦NeuroSphinx⁩ ⁦ERN eUROGEN⁩ #collaboration link.springer.com/article/10.100…

📢 It's #SexualHealthWeek! Early symptoms of #PenileCancer (sores, redness, discharge) can be mistaken for symptoms of an STI, delaying diagnosis & treatment. If you notice anything unusual, don't "ignore it"—talk to a doctor! 💡✅ youtube.com/watch?v=YLbSz7… Orchid European Association of Urology (EAU)

We're thrilled to participate in the #DeCODe Kick-Off Meeting with other stakeholders! ERN eUROGEN is proud to be part of this initiative, driving innovation in medical devices for #RareDiseases. Stay tuned for the full report coming soon! #MedicalInnovation #EU4Health #ERN

Join a ERN eUROGEN & @ERNICA webinar supported by ARM-Net & EUROPEAN PAEDIATRIC SURGEONS’ ASSOCIATION: 🖥 Transition Zone Pull Through, Definition, Functional Consequences & Management 👥 Joep Derikx & Jack Langer 📅 Wed 18 Sep, 18:00 CEST 🔗bit.ly/ERNeUROGEN18Se… #UroSoMe #Urology #PedUro #SoMe4PedSurg