Annual Meeting WG Session II - 𝐓𝐌𝐀

As every year, we take the opportunity to hold our working group sessions on site during the annual meeting 💡

Our second WG session will take place on Tuesday, May 5th from 14:15 - 16:15 CET, which includes the 𝐓𝐡𝐫𝐨𝐦𝐛𝐨𝐭𝐢𝐜 𝐌𝐢𝐜𝐫𝐨𝐚𝐧𝐠𝐢𝐨𝐩𝐚𝐭𝐡𝐢𝐞𝐬 WG

Annual Meeting WG Session I - 𝐏𝐞𝐝𝐢𝐚𝐭𝐫𝐢𝐜 𝐂𝐊𝐃 & 𝐃𝐢𝐚𝐥𝐲𝐬𝐢𝐬

As every year, we take the opportunity to hold our working group sessions on site during the annual meeting 👥 

Check out more info here www.erknet.org/our-experts/expert-work-...

Annual Meeting WG Session I - 𝐌𝐞𝐭𝐚𝐛𝐨𝐥𝐢𝐜 𝐍𝐏 + 𝐒𝐭𝐨𝐧𝐞 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬

As every year, we take the opportunity to hold our working group sessions on site during the annual meeting 👥 

Check out more info here www.erknet.org/our-experts/expert-work-... 💡

🧬 What does CKD273 measure?

Not one marker, but a pattern of 273 urinary peptides reflecting early kidney tissue changes and disease progression, often before standard labs shift.

#CKD273 #Peptidomics #CKD #PrecisionMedicine #PICKEDproject

🧪 From sample to result: how CKD data is generated.
From lab analysis to data modelling, each step helps turn biology into insights for personalised kidney care.

#PICKEDproject #CKD #PrecisionMedicine

Group Discussions - ECRD2026 Bring your ideas to the table and help shape the conversations that matter at ECRD 2026 in Prague! On Wednesday, 3 June, from 15:30 to 16:30 CET, in-person participants will be able to join one of thr...

Do you want to bring your ideas and help drive discussions at #ECRD2026 in Prague?

Selected participants will have the opportunity to moderate small group discussions; creating space for exchange, collaboration & new ideas.

🗓️ Deadline: 17.04.26, 6 PM CET
🔗 www.rare-diseases.eu/groupdiscuss...

Annual Meeting Session III - 𝐄𝐑𝐊𝐑𝐞𝐠 𝐎𝐮𝐭𝐩𝐮𝐭𝐬: 𝐂𝐨𝐥𝐥𝐚𝐛𝐨𝐫𝐚𝐭𝐢𝐯𝐞 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐏𝐫𝐨𝐣𝐞𝐜𝐭, 𝐄𝐱𝐜𝐡𝐚𝐧𝐠𝐞𝐬 

The second part of our registry activities block on Tuesday, May 5th from 10:00 - 11:00 CET, moderated by Franz Schaefer, and it's packed with interesting talks 🗣️

Register here: https://tinyurl.com/2tmenbey

Annual Meeting WG Session I - 𝐇𝐞𝐫𝐞𝐝𝐢𝐭𝐚𝐫𝐲 𝐆𝐏

As every year, we take the opportunity to hold our working group sessions on site.
Our first WG session will take place on Mon., May 4th from 16:30 - 18:30 CET, which includes the 𝐇𝐞𝐫𝐞𝐝𝐢𝐭𝐚𝐫𝐲 𝐆𝐏 WG

Check out the highlights from the last session 💡

Annual Meeting Session III - 𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐲 𝐀𝐜𝐭𝐢𝐯𝐢𝐭𝐢𝐞𝐬: 𝐎𝐯𝐞𝐫𝐯𝐢𝐞𝐰 𝐚𝐧𝐝 𝐔𝐩𝐝𝐚𝐭𝐞𝐬

Our next session on Tue., May 5th from 09:35-10:00 CET leads into our registry activities block. 

Don't miss this session to get a first look at ERKReg 2.0 and our subregistries 👀 

Register here: 🔗 https://tinyurl.com/2tmenbey

Annual Meeting Session II - 𝐉𝐀𝐑𝐃𝐈𝐍 𝐎𝐮𝐭𝐜𝐨𝐦𝐞𝐬 𝐚𝐧𝐝 𝐈𝐦𝐩𝐥𝐞𝐦𝐞𝐧𝐭𝐚𝐭𝐢𝐨𝐧 𝐢𝐧𝐭𝐨 𝐍𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐇𝐞𝐚𝐥𝐭𝐡 𝐒𝐲𝐬𝐭𝐞𝐦

Here we showcase how collaborative EU efforts are shaping measurable outcomes, structured care pathways, and scalable integration strategies for rare kidney diseases

Virtual Reg🔗 https://tinyurl.com/2tmenbey

Annual Meeting Session I - 𝐃𝐢𝐚𝐠𝐧𝐨𝐬𝐭𝐢𝐜𝐬 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐟𝐨𝐫 𝐔𝐧𝐬𝐨𝐥𝐯𝐞𝐝 𝐏𝐚𝐭𝐢𝐞𝐧𝐭𝐬

We're starting out strong with our first session on Tuesday, May 4th from 15:35-16:00 CET.
A discussion on how we can improve diagnosis for patients who remain without answers 👥

Virtual registration: https://tinyurl.com/2tmenbey

🇫🇷 A postcard from Lyon just arrived…

Only 5 weeks to go until our ERKNet Annual Meeting!

In Lyon, we’ll be welcoming around 150 participants from 60 centres across 18 countries.
Virtual attendance will be available.

Expect a few more postcards from us with what’s waiting for you in Lyon 💙

𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇷🇴

At the Bucharest Fundeni Clinical Institute, Franzi spent five days supporting ERKReg data entry and exchanging ideas to improve the registry. Vă mulțumim mult pentru ospitalitate 💙💛❤️📊

📢 We have some 𝐧𝐞𝐰 𝐖𝐞𝐛𝐢𝐧𝐚𝐫𝐬 coming your way!

Topic: 𝐂𝐢𝐧𝐚𝐜𝐚𝐥𝐜𝐞𝐭 𝐢𝐧 𝐝𝐢𝐚𝐥𝐲𝐬𝐢𝐬 𝐚𝐧𝐝 𝐛𝐞𝐥𝐨𝐰 3 𝐲𝐞𝐚𝐫𝐬 𝐨𝐟 𝐚𝐠𝐞 𝐚𝐧𝐝 𝐚𝐟𝐭𝐞𝐫 𝐓𝐱
🗓️ Date: 14 April
🕓 Time: 4 - 5 PM CET
🗣️ Speakers: Julie Bernador (France)

Together with ESPN 

🔗 Register here: register.gotowebinar.com/register/885017075440052...

𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇳🇱

At the 𝐀𝐦𝐬𝐭𝐞𝐫𝐝𝐚𝐦 𝐀𝐜𝐚𝐝𝐞𝐦𝐢𝐜 𝐔𝐧𝐢𝐯𝐞𝐫𝐬𝐢𝐭𝐲 𝐌𝐞𝐝𝐢𝐜𝐚𝐥 𝐂𝐞𝐧𝐭𝐞𝐫 (𝐀𝐔𝐌𝐂), Franzi spent a couple of days supporting ERKReg data entry and exchanging ideas to improve the registry. Hartelijk dank voor de fijne tijd ❤️🤍💙📊

ERNs discuss 𝐭𝐫𝐚𝐧𝐬𝐢𝐭𝐢𝐨𝐧 𝐢𝐧 𝐫𝐚𝐫𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬 🚀

Today concludes Day 1 of this workshop with a focus on shaping the future of 𝐢𝐧𝐭𝐞𝐠𝐫𝐚𝐭𝐞𝐝 𝐭𝐫𝐚𝐧𝐬𝐢𝐭𝐢𝐨𝐧 𝐩𝐚𝐭𝐡𝐰𝐚𝐲𝐬
Our ERKNet team was on site to actively contribute to the process.

We hope to build a sustainable transition framework together.

Highlighting our 𝐄𝐑𝐊𝐍𝐞𝐭 𝐒𝐮𝐫𝐯𝐞𝐲𝐬 📝 

The Working Groups of ERKNet regularly conduct online surveys to address 𝐬𝐩𝐞𝐜𝐢𝐟𝐢𝐜 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐪𝐮𝐞𝐬𝐭𝐢𝐨𝐧𝐬 𝐢𝐧 𝐢𝐧𝐝𝐢𝐯𝐢𝐝𝐮𝐚𝐥 𝐫𝐚𝐫𝐞 𝐤𝐢𝐝𝐧𝐞𝐲 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬. 

So far, 37 surveys have been completed.
🔹 14 published
🔹 13 in data analysis and manuscript preparation
🔹 12 actively open

🌟Meet Simge Celik Stojanovic - Project- and Patient Engagement Manager 🌟

Having Simge in the office has been an absolute enrichment. Read up on career so far and what her co-workers have to say about her 🇹🇷

📢Our 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫 highlight in March with ESPN!

Topic: 𝐆𝐮𝐢𝐝𝐞𝐥𝐢𝐧𝐞 𝐨𝐧 𝐭𝐡𝐞 𝐃𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 𝐚𝐧𝐝 𝐌𝐚𝐧𝐚𝐠𝐞𝐦𝐞𝐧𝐭 𝐨𝐟 𝐂𝐚𝐫𝐝𝐢𝐨𝐯𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 𝐂𝐊𝐃
🗓️ Date: 10 March
🕓 Time: 4 - 5 PM CET
🗣️ Speakers: Rukshana Shroff & Stella Stabouli

🔗 Registration Link: register.gotowebinar.com/register/454178281854430...

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: register.gotowebinar.com/register/522158886776538...

📢 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: register.gotowebinar.com/register/801978108926902...

📢 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: register.gotowebinar.com/register/341084055306100...

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: register.gotowebinar.com/register/715358253114087...

✨ 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 🖤💛♥️