ERKNet - European Reference Network for Rare Kidney Diseases

𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇮🇹

At the Genoa Istituto Giannina Gaslini, Franzi spent four days supporting ERKReg data entry and exchanging ideas to improve the registry. Grazie per essere stato un ospite meraviglioso 💚🤍❤️📊

📢 Next 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫 in February!

Topic: 𝐏𝐔𝐕 (𝐏𝐨𝐬𝐭𝐞𝐫𝐢𝐨𝐫 𝐔𝐫𝐞𝐭𝐡𝐫𝐚𝐥 𝐕𝐚𝐥𝐯𝐞𝐬)
🗓️ Date: 24 February
🕓 Time: 4 - 5 PM CET
🗣️ Speaker: Michał Maternik
📝 Moderator: Jens König

Together with ESPN

🔗 Register here: https://register.gotowebinar.com/register/5221588867765388886

📢 𝐂𝐚𝐥𝐥 𝐟𝐨𝐫 𝐀𝐛𝐬𝐭𝐫𝐚𝐜𝐭𝐬 - ERKNet Annual Meeting 2026 📢 

ERKNet members only:
The ERKNet Annual Meeting 2026 will feature a dedicated sessions highlighting 𝐜𝐮𝐫𝐫𝐞𝐧𝐭 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐢𝐧 𝐫𝐚𝐫𝐞 𝐤𝐢𝐝𝐧𝐞𝐲 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬💡 

If you are interested, please 𝐬𝐮𝐛𝐦𝐢𝐭 𝐲𝐨𝐮𝐫 𝐚𝐛𝐬𝐭𝐫𝐚𝐜𝐭 𝐛𝐲 𝐅𝐞𝐛𝐫𝐮𝐚𝐫𝐲 08𝐭𝐡!

📢 Next 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫!

Join us for our next webinar, together with ERA

💻 Topic: 𝐀𝐮𝐭𝐨𝐢𝐦𝐦𝐮𝐧𝐞 𝐓𝐮𝐛𝐮𝐥𝐨𝐩𝐚𝐭𝐡𝐢𝐞𝐬
🗓️ Date: 10 February
🕓 Time: 4 - 5 PM CET
🗣️ Speaker: Rhys Evans

𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 here: https://register.gotowebinar.com/register/8019781089269025626

📢 𝐍𝐞𝐱𝐭 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫!

Join us for our next webinar, together with ESPN and ERA

💻 Topic: 𝐍𝐞𝐰 𝐈𝐧𝐬𝐢𝐠𝐡𝐭𝐬 𝐢𝐧𝐭𝐨 𝐭𝐡𝐞 𝐏𝐚𝐭𝐡𝐨𝐩𝐡𝐲𝐬𝐢𝐨𝐥𝐨𝐠𝐲 𝐨𝐟 𝐈𝐝𝐢𝐨𝐩𝐚𝐭𝐡𝐢𝐜 𝐍𝐞𝐩𝐡𝐫𝐨𝐭𝐢𝐜 𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞
🗓️ Date: 27 Jan
🕓 Time: 4 - 5 PM CET
🗣️ Speaker: Felicitas Hengel

𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫: https://register.gotowebinar.com/register/3410840553061000543

ERKsperience is coming soon🎉

Our new ERKNet case-based webinar series starts with:
“The Hyperoxalurias – genetic, rare & acquired forms”
Find out more about our new format in the slides➡️

🗓 22 January 2026 | 🕔 17:00–18:00 CET

🔗Register: https://register.gotowebinar.com/register/7153582531140874336

✨ 𝐎𝐮𝐭 𝐨𝐟 𝐎𝐟𝐟𝐢𝐜𝐞: Holiday Break 🎉

After an incredibly busy and eventful year, the ERKNet team is taking a well-deserved break to rest and recharge. 🛋️💤 We’ll be out of office from December 23rd to January 7th.

wishing you a peaceful and joyful holiday season. See you in 2026! 🥂💙

✨ 𝐒𝐞𝐚𝐬𝐨𝐧’𝐬 𝐠𝐫𝐞𝐞𝐭𝐢𝐧𝐠𝐬 𝐟𝐫𝐨𝐦 𝐭𝐡𝐞 𝐄𝐑𝐊𝐍𝐞𝐭 𝐭𝐞𝐚𝐦 ✨

As the year comes to an end, we want to say thank you to our whole ERKNet community across Europe and beyond 💙

Here’s to continued collaboration, connection, and shared goals in the year ahead ✨

ERKsperience is coming soon 🎉

Our new ERKNet case-based webinar series kicks off with:
“The Hyperoxalurias – genetic, rare & acquired forms”
Find out more ⬇️

🗓 22 January 2026 | 🕔 17:00–18:00 CET

🔗 Register here & send us your hyperoxaluria cases to be featured!
https://tinyurl.com/3knkkyn3

📢 𝐔𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫!

Join us for our last webinar of this year together with ESPN!
Topic: 𝐃𝐞𝐧𝐭’𝐬 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐆𝐮𝐢𝐝𝐞𝐥𝐢𝐧𝐞
Date: 09 Dezember

𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇧🇪

At UZ Leuven, Yara spent multiple days supporting ERKReg data entry and exchanging ideas to improve the registry. Bedankt voor de geweldige samenwerking 🖤💛♥️

𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐨𝐩𝐭𝐢𝐨𝐧𝐬 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞 🔎

beyond our funded fellowships, we’re sharing extra self-funded projects you can still join. Today’s spotlight: DNAJB11.
Swipe for the teaser and check our website for how to get involved.
https://www.erknet.org/research/erknet-research-projects/projects-overview

🌍✨ Applications now open for the ERKNet Clinical Exchange Programme!
A unique opportunity for junior healthcare professionals to gain hands-on experience in rare kidney diseases at ERKNet centres across Europe.
Swipe through for all the details and apply today!

Meet Carol Barahona Ponce - Project Manager 🌟

Check out how Carol’s expertise, competence, and contagious warmth contribute to our work and energize the ERKNet office every day 🇨🇱

𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇮🇹

At Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico in Milan, Franziska spent five days supporting ERKReg data entry and exchanging ideas to improve the registry.
Teamwork, hands-on support, and fresh ideas to make ERKReg even better.
See how the visit went! 👉

🌟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