European Rare Kidney Disease Reference Network

08/07/2026

We're launching the first episode of our video series dedicated to key topics in the rare disease landscape – through Q&A Series from "Inside the ERNs”. 🎬

This episode focuses on 𝐠𝐞𝐧𝐞𝐭𝐢𝐜 𝐜𝐨𝐮𝐧𝐬𝐞𝐥𝐢𝐧𝐠, a critical component of care that supports individuals and families in understanding the impact of genetics on health. It involves interpreting genetic information, assessing inherited risks, and guiding informed decision-making

🧬Genetic counseling is a process where trained professionals help individuals and families understand how genetics may impact their health. It involves interpreting genetic test results, assessing the risk of inherited conditions, and guiding people through complex medical and emotional decisions.

Its importance becomes especially clear in the context of rare diseases where 80% 𝐫𝐚𝐫𝐞 𝐜𝐨𝐧𝐝𝐢𝐭𝐢𝐨𝐧𝐬 𝐡𝐚𝐯𝐞 𝐚 𝐠𝐞𝐧𝐞𝐭𝐢𝐜 𝐨𝐫𝐢𝐠𝐢𝐧, and patients often face long, uncertain journeys before receiving a diagnosis. Genetic counseling helps bring clarity to that journey, explaining not just what a diagnosis is, but why it occurs and what it means for the future.

💻 Watch the first episode to discover and hear directly from ERN experts and patients’ representatives as they share how genetic counseling is helping turn uncertainty into insight and improving patient care
https://youtu.be/eyvnL1jfDmc?si=GRvYQWkCRXLTuH7-

Thank you so much to the speakers:
Jackie Turner, Genetic Counsellor at Mater University Hospital Dublin, Ireland
Hélène Dollfus, ERN-EYE Coordinator, Strasburg University Hospital, France
and Susana Carvajal Arjona, ePAG for ERKNet and member and co-founder of the “ASOCIACION HIPOFAM”, Spain

In this episode of the "Inside the ERNs – Q&A Series", we explore w...

30/06/2026

📣 Help us shape the 𝐟𝐮𝐭𝐮𝐫𝐞 𝐨𝐟 𝐭𝐫𝐚𝐧𝐬𝐢𝐭𝐢𝐨𝐧 𝐜𝐚𝐫𝐞!

As part of the ERKNet Transition Task Force, we are launching the ERKNet 𝐘𝐨𝐮𝐭𝐡 𝐏𝐚𝐧𝐞𝐥, a new initiative that gives young people living with rare kidney diseases the opportunity to actively contribute to improving the transition from pediatric to adult care.

Youth Panel members will:
🔹 Help identify challenges
🔹 Co-develop practical solutions
🔹Contribute to broader ERKNet activities, ensuring that the patient perspective is embedded throughout our work.

We invite our network of healthcare professionals, patient organisations, and advocacy groups to 𝐡𝐞𝐥𝐩 𝐮𝐬 𝐬𝐩𝐫𝐞𝐚𝐝 𝐭𝐡𝐞 𝐰𝐨𝐫𝐝. If you know a young person who might be interested in becoming part of the Youth Panel, please share this opportunity with them.

🔗 Learn more and apply: [email protected]

29/06/2026

📬 The June 𝐄𝐑𝐊𝐍𝐞𝐭 𝐍𝐞𝐰𝐬𝐥𝐞𝐭𝐭𝐞𝐫 is out now!

What's inside?

👩‍👩‍👦‍👦 Upcoming patient events, like 𝐀𝐒𝐇𝐔𝐀 - Síndrome Hemolítico Urémico Atípico's 13th Annual Conference or the 𝐏𝐊𝐃 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐎𝐟𝐟𝐢𝐜𝐢𝐚𝐥 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐕𝐨𝐢𝐜𝐞 𝐃𝐚𝐲
🤝 Developments from the second evaluation round of the Comprehensive 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐏𝐫𝐢𝐨𝐫𝐢𝐭𝐢𝐳𝐚𝐭𝐢𝐨𝐧 Framework for Advanced Therapies with ERDERA
🌍 Recaps of all the events ERKNet attended in June, like the 𝐄𝐂𝐑𝐃, the 𝐄𝐑𝐀 congress or the 𝐢𝐧𝐭𝐞𝐫-𝐄𝐑𝐍 𝐠𝐮𝐢𝐝𝐞𝐥𝐢𝐧𝐞 meeting in Heidelberg
📚 Our recently launched 𝐧𝐞𝐰𝐬𝐥𝐞𝐭𝐭𝐞𝐫 𝐚𝐫𝐜𝐡𝐢𝐯𝐞, in case you missed anything
🚀 Exciting events that are coming up this year

We won't spoil all the details here — you'll have to read the newsletter yourself to discover what's ahead!

𝐒𝐮𝐛𝐬𝐜𝐫𝐢𝐛𝐞 𝐡𝐞𝐫𝐞: https://www.erknet.org/

26/06/2026

💻 “𝐅𝐫𝐨𝐦 𝐂𝐚𝐫𝐞 𝐭𝐨 𝐂𝐮𝐫𝐞: An EU-wide Network advancing rare kidney disease healthcare and research”

Yesterday, EKHA - European Kidney Health Alliance and ERKNet brought together patients, clinicians, researchers, policymakers, and industry representatives for a webinar.

The discussion highlighted persistent challenges in rare kidney diseases, from delayed diagnosis and fragmented care to unequal access across Europe.
Building on EKHA’s Call to Action, the webinar 𝐟𝐨𝐜𝐮𝐬𝐞𝐝 𝐨𝐧 𝐟𝐨𝐮𝐫 𝐩𝐫𝐢𝐨𝐫𝐢𝐭𝐢𝐞𝐬:

🔹 Early detection & diagnosis
🔹 Awareness & coordinated care pathways
🔹 Data & research
🔹 Innovation & equitable access

One message stood out clearly: Europe already has strong expertise, networks, and tools in place. The next step is turning them into coordinated action.
Stronger registries, responsible data sharing, and continued collaboration across all stakeholders will be key to advancing research and ensuring that innovation reaches patients equally across Europe.

Thank you to all speakers and participants for contributing to this important discussion and especially to Djalila Mekahli for moderating 💙

24/06/2026

💬 Recap from our 𝐛𝐢-𝐚𝐧𝐧𝐮𝐚𝐥 𝐄𝐒𝐂𝐀𝐏𝐄 𝐍𝐞𝐭𝐰𝐨𝐫𝐤 𝐌𝐞𝐞𝐭𝐢𝐧𝐠.

Two weeks ago, we welcomed the ESCAPE community back to Heidelberg.
Over two days, colleagues from across Europe came together to share progress and updates from ongoing projects and trials 📊

Highlights included updates from the 𝐞𝐬𝐂𝐚𝐩𝐞𝐊𝐃, 𝐏𝐑𝐄𝐂𝐈𝐒𝐄, and CompCure cohort studies, new findings from the 4C Cohort, discussions on CKD progression, and insights into emerging treatment approaches such as the 𝐄𝐦𝐩𝐚𝐊𝐢𝐝𝐧𝐞𝐲𝐊𝐢𝐝𝐬 𝐓𝐫𝐢𝐚𝐥. We also received updates from ongoing initiatives including 𝐒𝐎𝐏𝐇𝐎𝐂𝐋𝐄𝐒 𝐚𝐧𝐝 𝐄𝐮𝐫𝐀𝐊𝐈𝐝.

We are especially grateful for the continued support and long-standing engagement of our members and equally happy to welcome new faces to the network ❤️

Thank you to everyone who contributed, we look forward to seeing everyone again for our fall meeting from 26.-27.11.2026 back in Heidelberg!

23/06/2026

🤝 Inter-ERN Consensus Meeting | 𝐁𝐞𝐥𝐳𝐮𝐭𝐢𝐟𝐚𝐧 𝐢𝐧 𝐯𝐨𝐧-𝐇𝐢𝐩𝐩𝐞𝐥-𝐋𝐢𝐧𝐝𝐚𝐮-𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞

Last week, from 15th - 16th of June, international experts met in Heidelberg to develop consensus recommendations on the use of belzutifan in von Hippel–Lindau (VHL) disease

This inter-ERN initiative brings together ERKNet, ERN eUROGEN, ERN GENTURIS, Endo-ERN, ERN-EYE, the International Kidney Cancer Coalition (IKCC) and patient representatives from VHL Alliance Europa.

With belzutifan representing a new targeted treatment option for selected 𝐕𝐇𝐋-𝐚𝐬𝐬𝐨𝐜𝐢𝐚𝐭𝐞𝐝 𝐭𝐮𝐦𝐨𝐮𝐫𝐬, discussions focused on how to translate innovation into clinical practice through harmonized, multidisciplinary, and patient-centred recommendations.

📖 𝐑𝐞𝐚𝐝 𝐦𝐨𝐫𝐞: https://www.erknet.org/news/inter-ern-consensus-meeting-belzutifan-in-vhl

11/06/2026

𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇮🇹

At the 𝐑𝐨𝐦𝐞 𝐆𝐞𝐦𝐞𝐥𝐥𝐢 𝐇𝐨𝐬𝐩𝐢𝐭𝐚𝐥, Franzi spent four days supporting ERKReg data entry and exchanging ideas to improve the registry. Grazie per tutto ai nostri colleghi di Roma 💚🤍♥️📊

09/06/2026

📢 Dont miss our next 𝐖𝐞𝐛𝐢𝐧𝐚𝐫 in July

Topic: 𝐁𝐌𝐓-𝐚𝐬𝐬𝐨𝐜𝐢𝐚𝐭𝐞𝐝 𝐓𝐌𝐀
🗓️ Date: Tuesday, 07 July
🕓 Time: 4 - 5 PM CET
🗣️ Speaker: Marina Vivarelli (Italy)

👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: https://register.gotowebinar.com/register/1922072124726185563

🖥️ All upcoming webinars: https://www.erknet.org/education-training/next-webinars

08/06/2026

ERKNet was pleased to be represented at in Prague, where the rare disease community came together to call for stronger, coordinated European action 🇪🇺

Key discussions highlighted the need for an 𝐄𝐔 𝐀𝐜𝐭𝐢𝐨𝐧 𝐏𝐥𝐚𝐧 𝐨𝐧 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞𝐬, improved access to diagnosis and specialised care, stronger patient involvement, and better integration of research, data and innovation.

ERKNet contributed to the exchange through the participation of Carol Barahona Ponce, who presented the poster pitch “INNOVARE-RD: A Comprehensive Rare Disease Prioritisation Framework for Advanced Therapies”, and Susana Carvajal Arjona Carvajal, ERKNet ePAG representative, who strengthened connections with the wider rare disease community.

We are grateful for the great discussions and look forward to continuing our work towards more coordinated, patient-centred and innovation-ready rare disease care in Europe 🤲

05/06/2026

ERA Congress 2026 ⭐️

Our colleague Giulia Bassanese presented findings at in Glasgow from the multinational CompCure cohort.

The analysis revealed important gaps in complement diagnostics and diagnostic accuracy for primary C3G and IC-MPGN across pediatric and adult nephrology centers throughout Europe.

These results highlight the need for more standardized and comprehensive diagnostic approaches to enable more precise disease classification, improve patient stratification, and ultimately support better patient care.
Thanks for having us, Glasgow and European Renal Association (ERA) ♥️