🌟Ready for the next "𝐄𝐑𝐊𝐍𝐞𝐭 𝐂𝐨𝐧𝐧𝐞𝐜𝐭: 𝐍𝐞𝐰𝐬 𝐚𝐧𝐝 𝐈𝐧𝐧𝐨𝐯𝐚𝐭𝐢𝐨𝐧𝐬" Webinar?🌟 Join us for updates, insights and developments within the ERKNet community. 📅 Date: October 28, 2025 ⏰ Time: 4:00 PM CET 📍 Location: Online 👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞:

𝐅𝐀𝐐: 𝐞𝐏𝐀𝐆 𝐫𝐞𝐩𝐫𝐞𝐬𝐞𝐧𝐭𝐚𝐭𝐢𝐯𝐞𝐬💡 What are ERKNet ePAGs and how are they shaping the future of rare kidney disease patients in Europe? 💬 Do you match the criteria and want to make a difference? Join the ERKNet ePAGs and get involved! 🔗 https://www.erknet.org/patients/erknet-epags/patient-engagement-rules

📢 𝐔𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫! Our Webinar September is coming to an end with our last session! Topic: 𝐏𝐡𝐨𝐬𝐩𝐡𝐚𝐭𝐞 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬 Date: 30 September Speaker: Carsten Wagner Moderator: Jens König 👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: https://register.gotowebinar.com/register/2567953835042611545

Meet Anna - Project Manager🌟 Our team keep growing... Check out the slides and discover how Anna is contributing to rare kidney disease research within the ERKNet team.

📚𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 𝐢𝐬 𝐨𝐩𝐞𝐧! ERKNet members only - Join the 3-year ERKNet Postgraduate Curriculum (Jan 15, 2026 – Dec 15, 2028) with webinars, interactive e-learning and clinical training—earn the European Specialist in Rare Kidney Diseases certificate 🗓️Apply by Oct 31, 2025 → https://tinyurl.com/2jxxfx8f

📝𝐄𝐑𝐊𝐑𝐞𝐠 𝐁𝐚𝐬𝐢𝐜 𝐓𝐫𝐚𝐢𝐧𝐢𝐧𝐠 𝐒𝐞𝐬𝐬𝐢𝐨𝐧 On 𝐌𝐨𝐧𝐝𝐚𝐲, 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 29𝐭𝐡, we have our next ERKReg basic training session📚 The session will be divided into 2 different parts: 40 min - Basic information about ERKReg 20 min - Q&A 🔗𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐫𝐢𝐠𝐡𝐭 𝐡𝐞𝐫𝐞: https://www.erknet.org/databases/erkreg-training-sessions

𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇪🇸 At Hospital Universitario 12 de Octubre in Madrid, Jose spent three weeks supporting ERKReg data entry and exchanging ideas to improve the registry. Gracias por la cálida bienvenida, equipo de Madrid ♥️💛📊

🌍 Multi-stakeholder workshop: Prioritizing rare diseases for advanced therapies (ATMPs) Day 2 today! Led by ERDERA, this workshop brings together stakeholders from across Europe to tackle a big question: how can we better prioritize rare diseases for advanced therapies?

📢 Upcoming ERKNet Webinar! 📝 Topic: Membranous Nephropathy 🗓️ Date: September 16, 2025 👩‍⚕️ Speaker: Anne-Els van de Logt  👉 Register now: https://register.gotowebinar.com/register/1699152730290967637

🌐 N is for Network Structure! ERKNet links 70+ expert centers, clinicians, researchers & patients across Europe. Together we build guidelines, drive research & share expertise to improve care in rare kidney diseases. #ABCforRare #ERKNet #KidneyHealth

Don´t miss the upcoming ReCONNET Webinar!

☀️September Webinars☀️ Join us for our Webinar packed September! From diagnosis and treatment to the latest research developments 🔬 — there’s something for everyone. No matter your background, our webinars are free and open to all 👥 🔗 https://www.erknet.org/education-training/next-webinars

On the Road with ERKReg 🚙🇫🇷 At Hôpital Necker in Paris, Yara spent two weeks supporting ERKReg data entry and exchanging ideas to improve the registry. Merci to the Paris team for the warm welcome, great teamwork, and valuable insights! 💙📊 #ERKNetOnTheRoad #RareKidneyDiseases #Paris #ERKReg

🧪 FAQ: ERKNet Patient-Initiated Research Have a project idea on rare kidney disease? Patient reps & ePAG members can apply. ERKNet supports one meeting (≤6 people) to launch approved projects. Apply: https://www.erknet.org/patients/research/research-proposals-from-patients #ERKNet #RareDisease

🔍 ERKsplain – Kidney Structure Changes (Part II) Quick look back: structural kidney differences can be present from birth or appear later. Some are harmless, others may affect function and need care. In this part, we cover more types. Save & share for awareness! #KidneyHealth #ERKsplain

Don´t miss our ERKReg Training Session today!

🌟Meet Sheila, our MSCA PhD Researcher🌟 Dive into her slides and explore the incredible contributions she’s making with the ERKNet team. #MeetTheTeam #ERKNet #RareKidneyDiseases

📢 Upcoming ReCONNET Webinar! 📝 Topic: Microvascular Involvement in Antiphospholipid Syndrome (APS) 🗓️ Date: September 3, 2025 👩‍⚕️ Speaker: Savino Sciascia (Italy) 👉 Register now: https://us06web.zoom.us/webinar/register/WN_8cel9tnMTC6Blj14Fw9zmg#/registration

We’re back from ERKNet’s summer break! ☀️ Join our free expert-led webinars on rare kidney diseases 🔍 From diagnosis to cutting-edge research 🔬 — open to all 👥 More info: https://www.erknet.org/education-training/next-webinars

Join our ERKReg Basic Training!

Join our ERKReg Basic Training!

On the Road with ERKReg 🚙🇫🇷 At Hôpital Femme Mère Enfant in Lyon, Yara spent a week supporting ERKReg data entry and exchanging ideas to improve the registry. Merci to the Lyon team for the warm welcome, great teamwork, and valuable insights! 💙📊 #ERKNetOnTheRoad #RareKidneyDiseases #Lyon #ERKReg

New in KI Reports: GDF-15 (serum) & uEGF (urine) independently associate with pediatric CKD progression; combined models perform best—validated in 4C & ESCAPE cohorts. Big collaborative effort by our network. 🔗 https://www.sciencedirect.com/science/article/pii/S2468024925004358?via%3Dihub

📝ERKReg Basic Training Session On Monday, August 25th, we host our ERKReg training session again📚. 40 min - Basic information about ERKReg. 20 min - Questions and answers. 🔗Register right here: www.erknet.org/databases/er... #ERKucation #rarekidneydisease #erknet #training #kidneydisease

📝ERKReg Basic Training Session On Monday, August 25th, we host our ERKReg training session again📚. 40 min - Basic information about ERKReg. 20 min - Questions and answers. 🔗Register right here: www.erknet.org/databases/er... #ERKucation #rarekidneydisease #erknet #training #kidneydisease

📱 M is for Mobile App for Patients! The NELIA App helps people with rare kidney diseases manage symptoms, track data & support research — all from their phones. 🔗 Learn more: nelia-rgd.com/uk Download available for Android and Apple. #ERKNet #NeliaApp #DigitalHealth #RareKidneyDiseases #ABCforRare

Join us for today’s Basic Training session!

📝ERKReg Basic Training Session On Thursday, July 31st, we host our ERKReg training session again📚. 40 min - Basic information about ERKReg. 20 min - Questions and answers. 🔗Register right here: www.erknet.org/databases/er... #ERKucation #rarekidneydisease #erknet #training #kidneydisease

🔍 Erksplain - Kidney Structure Changes These are differences in the way kidneys are formed or connected. Some are harmless, while others may affect function and need medical attention. They can be present at birth or develop later in life. 🧠 Stay tuned for Part 2! #KidneyHealth #KidneyAwareness

📣 Help Us 𝐈𝐦𝐩𝐫𝐨𝐯𝐞 𝐓𝐫𝐚𝐧𝐬𝐢𝐭𝐢𝐨𝐧 𝐂𝐚𝐫𝐞 𝐀𝐜𝐫𝐨𝐬𝐬 𝐄𝐮𝐫𝐨𝐩𝐞 Calling all of our 𝐦𝐞𝐦𝐛𝐞𝐫𝐬 to participate! On behalf of the ERN Overarching Transition Group, please take part in a Europe-wide survey exploring how young patients with rare and complex conditions are transitioned. 🔗 𝐬𝐮𝐫𝐯𝐞𝐲: lnkd.in/e2Z9aaMZ

🌟Meet Ariel, our Biostatistician🌟 Dive into her slides and explore the incredible contributions she’s making with the ERKNet team. #MeetTheTeam #ERKNet #RareKidneyDiseases

📝ERKReg Basic Training Session On Thursday, July 31st, we host our ERKReg training session again📚. 40 min - Basic information about ERKReg. 20 min - Questions and answers. 🔗Register right here: www.erknet.org/databases/er... #ERKucation #rarekidneydisease #erknet #training #kidneydisease

🧬 ERDERA has launched a new online survey 📅 Open until mid-July 🔒 Confidential 🤝 Co-created with patients 📝 Take the survey: shorturl.at/ePVuL ℹ️ Learn more: shorturl.at/c03db #RareDisease #PatientEngagement #ERDERA #PatientVoice

📝ERKReg Basic Training Session On Monday, June 30th, we host our ERKReg training session again📚. 40 min - Basic information about ERKReg. 20 min - Questions and answers. 🔗Register right here: www.erknet.org/databases/er... #ERKucation #rarekidneydisease #erknet #training #kidneydisease

Upcoming ERKNet Webinar! 📢 📝Topic: Anti-Factor H Auto-Antibodies 🗓️ Date: June 24, 2025 ⏰ Time: 4:00–5:00 PM CET 👩‍⚕️ Speaker: Michal Malina 👉 Register now: register.gotowebinar.com/register/711... 🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!

Upcoming ERKNet Webinar! 📢 📝Topic: Anti-Factor H Auto-Antibodies 🗓️ Date: June 24, 2025 ⏰ Time: 4:00–5:00 PM CET 👩‍⚕️ Speaker: Michal Malina 👉 Register now: register.gotowebinar.com/register/711... 🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!

📊 FAQ: CAMS Ever wondered how ERKNet tracks and supports the amazing work of its member centres? 🔍 Meet CAMS – our official internal tool for monitoring clinical, research & educational activities across the network. 📬Questions? 🔗 erknet.org/monitoring-systems/centre-activity-monitoring-system-cams

📍 ERKNet is present at the ERA Congress 2025 in Vienna! Come find us at booth X1.255 and learn more about our ERKNet network, the ERKReg registry, and the exciting projects we're working on. We’d love to meet you! 💬👋 #ERA2025 #ERKNet #RareKidneyDiseases #ERKReg #Networking #Vienna

🤝 L is for Liaisons! 🌍 What is it? At ERKNet, "Liaisons" means strategic collaboration—with professional societies, patient organisations, fellow ERNs, and EU-funded research projects—to improve care for people living with rare kidney diseases. #ERKNet #RareKidneyDiseases #CollaborationInCare

Upcoming ERKNet Webinar! 📢 📝Topic: Clinical Practice Recommendations on Kidney Management in Methylmalonic Acidemia 🗓️ Date: June 10, 2025 ⏰ Time: 4:00–5:00 PM CET 👩‍⚕️ Speaker: Aude Servais 👉 Register now: register.gotowebinar.com/register/515...

Upcoming ERKNet Webinar! 📢 📝Topic: Clinical Practice Recommendations on Kidney Management in Methylmalonic Acidemia 🗓️ Date: June 10, 2025 ⏰ Time: 4:00–5:00 PM CET 👩‍⚕️ Speaker: Aude Servais 👉 Register now: register.gotowebinar.com/register/515...

🚨 Webinar Reminder! 🚨 Join us for our next Webinar, hosted together with MetabERN, tomorrow 🏥🔬 📝 Topic: 𝐋𝐲𝐬𝐢𝐧𝐮𝐫𝐢𝐜 𝐏𝐫𝐨𝐭𝐞𝐢𝐧 𝐈𝐧𝐭𝐨𝐥𝐞𝐫𝐚𝐧𝐜𝐞 📅 Date: May 06, 2025 ⏰ Time: 4:00 - 5:00 PM CET 🎙 Speaker: Carlo Dionisi-Vici; Moderator: Francesco Emma 🔗 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: register.gotowebinar.com/register/350...

Erksplain - Kidney Transplantation 🚨 Kidney transplants save lives — but the average wait is 6–8 years. Deceased donors are matched by urgency and compatibility. Most people can donate — just register or tell your family! 💡 Organ donation = a true gift of life. 🌍 #KidneyTransplant #SaveLives

📝 ERKReg Basic Training Join us on Wednesday, May 7th for our next ERKReg training! 📚 🔹 40 min – Basics: ERKReg overview, patient entry, key guidelines. 🔹 20 min – Q&A: Ask live or submit questions in advance. 📩 Register here: www.erknet.org/databases/er... #ERKucation #rarekidneydisease

✨FAQ: Patient Journeys Patient Journeys are visual guides showing the typical path of life with a rare kidney disease—from symptoms to diagnosis, treatment, and ongoing care. 🔎 Explore them all: www.erknet.org/patient-journeys #PatientEmpowerment#PatientEngagement #HealthEquity

📘 New 2024 guideline on Alport syndrome just published in NDT by ERKNet, ERA & ESPN — covering diagnosis, management & treatment. Read the abstract: academic.oup.com/ndt/advance-... #AlportSyndrome #Nephrology #RareDisease #Guidelines

📢 New Rare Barometer results: 🔹 8 in 10 with rare or rare kidney diseases live with disabilities 🔹 23% unemployed 🔹 50%+ struggle with support 🔹 57–58% face discrimination 📄 tiny.cc/survey/RB_DailyLife 🌐 eurordis.org/voices Thanks EURORDIS, Rare Barometer & ePAGs! #RareBarometer #ERKNet #EURORDIS

Upcoming ERKNet Webinar! 📢 📝Topic: 𝐑𝐚𝐩𝐢𝐝 𝐠𝐞𝐧𝐞𝐭𝐢𝐜 𝐝𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 𝐢𝐧 𝐓𝐌𝐀 🗓️ Date: Apr 08, 2025 ⏰ Time: 4:00–5:00 PM CET 👩‍⚕️ Speaker: Laurent Mesnard; Moderator: Tom Nijenhuis 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞! https://register.gotowebinar.com/register/7102204546207211610

Don’t miss our Clinical Exchange Programme!

Upcoming ERKNet Webinar! 📢 📝Topic: 𝐑𝐚𝐩𝐢𝐝 𝐠𝐞𝐧𝐞𝐭𝐢𝐜 𝐝𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 𝐢𝐧 𝐓𝐌𝐀 🗓️ Date: Apr 08, 2025 ⏰ Time: 4:00–5:00 PM CET 👩‍⚕️ Speaker: Laurent Mesnard; Moderator: Tom Nijenhuis 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞! https://register.gotowebinar.com/register/7102204546207211610