European Rare Kidney Disease Reference Network

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Heidelberg
European Rare Kidney Disease Reference Network

ERKNet is devoted to improving the lives of patients with rare kidney diseases.

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) ♥️

02/06/2026

💙A Recap of our 𝐄𝐑𝐊𝐍𝐞𝐭 𝐀𝐧𝐧𝐮𝐚𝐥 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Lyon 🇫🇷

From inspiring sessions and engaging discussions to shared meals, team moments, and our now traditional journey together, which includes arriving a day early in a mini bus and spending the evening together, this reel captures a little of what makes our Annual Meeting so special.

Every year, we see that ERKNet is more than a network. It is a community built on collaboration, shared goals, and the people behind the work. The familiar atmosphere, the valuable input from colleagues across Europe, and the conversations that continue long after the sessions end are what make these meetings so imperative.

Many ideas, projects, and collaborations start here and we are excited to see where they will lead next.
Thank you to everyone who made Lyon such a success. We already can’t wait to welcome you next year to our home base in Heidelberg and show you what we have in store 💙

01/06/2026

𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐨𝐩𝐭𝐢𝐨𝐧𝐬 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞 🔎

beyond our funded fellowships, we’re sharing extra self-funded projects you can still join. Today’s spotlight: 𝐅𝐮𝐥𝐥 𝐇𝐨𝐮𝐬𝐞 𝐍𝐞𝐩𝐡𝐫𝐨𝐩𝐚𝐭𝐡𝐲.

Swipe for the teaser and check our website for how to get involved.
🔗https://tinyurl.com/49cvsr87

29/05/2026

📬 Our latest ERKNet Newsletter is out now!

What's inside?

🖥️ Registry updates, such as the new 𝐀𝐍𝐂𝐀 𝐕𝐚𝐬𝐜𝐮𝐥𝐢𝐭𝐢𝐬 𝐒𝐮𝐛𝐫𝐞𝐠𝐢𝐬𝐭𝐫𝐲
🌍 Developments from across the network, including the new 𝐂𝐀𝐌𝐒 𝐫𝐞𝐩𝐨𝐫𝐭
🤝 Our open call to become an 𝐀𝐟𝐟𝐢𝐥𝐢𝐚𝐭𝐞𝐝 𝐏𝐚𝐫𝐭𝐧𝐞𝐫 within the ERNs
📚 Educational updates and upcoming learning opportunities like the 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐞𝐱𝐜𝐡𝐚𝐧𝐠𝐞 𝐟𝐞𝐥𝐥𝐨𝐰𝐬𝐡𝐢𝐩 𝐩𝐫𝐨𝐠𝐫𝐚𝐦
🚀 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/

27/05/2026

The 2026 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐖𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐨𝐧 𝐀𝐥𝐩𝐨𝐫𝐭 𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞 is coming to Budapest from 5 to 7 September 2026 🇭🇺

It is organised by:
- Alport UK
- ERKNet
- Semmelweis University
- Alport Syndrome Alliance

This global event brings together patients, clinicians, researchers, pharmaceutical representatives and more. It is a space to share knowledge, learn from each other, and 𝐬𝐡𝐚𝐩𝐞 𝐭𝐡𝐞 𝐟𝐮𝐭𝐮𝐫𝐞 𝐨𝐟 𝐀𝐥𝐩𝐨𝐫𝐭 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐚𝐧𝐝 𝐜𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲 🤲

We will explore the latest research across kidney health, hearing, vision and genetics. You will hear about clinical trials, new treatments, and the importance of early diagnosis.

The workshop also creates space for collaboration. Through discussions and sessions, participants will look at new ideas, challenges and opportunities for the future ♥️

Most importantly, patient voices are at the centre. People from around the world will share their experiences and perspectives.

🔗 𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 𝐢𝐬 𝐨𝐩𝐞𝐧: www.alportsyndromealliance.org
If you are interested in taking part and have questions, please send an email to: [email protected]

We look forward to seeing you in Budapest! 🇭🇺

13/05/2026

𝐄𝐑𝐊𝐍𝐞𝐭 𝐀𝐧𝐧𝐮𝐚𝐥 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 2026 🇫🇷

Our 10th Annual Meeting concluded one week ago today. We're still letting everything sink in and could not be happier with the feedback, the results and the follow-up ideas and projects that came out of these three days.

With around 160 people on site in Lyon and 42 virtual attendees, we are reminded that coming together in person and taking the time to actively focus on our collaboration and projects within ERKNet (and beyond) remains to be extremely vital.

Thank you so much to everyone that joined and everyone that makes the network what it is; a ground for collaboration, progress and putting the needs of the patients at the forefront.

We can't wait to see everyone again in 2027 in Heidelberg 💙

05/05/2026

𝐃𝐚𝐲 2 𝐨𝐟 𝐨𝐮𝐫 𝐄𝐑𝐊𝐍𝐞𝐭 𝐀𝐧𝐧𝐮𝐚𝐥 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Lyon 🇫🇷

The momentum continues!
We started the day with our Network Board meeting, followed by a session on JARDIN, focusing on outcomes and implementation into national health systems. This led into a session on ERKNet registry activities, highlighting overview, innovation, and outputs across the network from our main and sub-registries 📊

A highlight of the morning was our poster session, featuring 19 posters showcasing both ePAG initiatives and research from across ERKNet. We wrapped up the first half of the day with our session on ATMPs in Nephrology.

Everything is running smoothly, and we’re looking forward to the second half of the day, which is already well underway 👏

Thank you again to the team in Lyon and all of our speakers so far!

04/05/2026

10th 𝐄𝐑𝐊𝐍𝐞𝐭 𝐀𝐧𝐧𝐮𝐚𝐥 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 - Day 1 in Lyon 🇫🇷

We started off with our ERKReg Board and ExCom meetings, followed by a warm welcome from our coordinator Franz Schaefer and ePAG chairs, Susana Carvajal Arjona & David van Bennekom ☀️
The first session today focused on Diagnostic Research, and we are now wrapping up the day with our first of three Working Group sessions (Hereditary GP, Metabolic NP, and Pediatric CKD/Dialysis)

It’s great to see everyone from across the network in person again, a bit like meeting old friends where no time seems to have passed 💙

A big thank you to the team in Lyon for hosting us. Looking forward to what the next two days will bring!

Adresse

Im Neuenheimer Feld 130. 3
Heidelberg
69120

Webseite

https://www.erknet.org/patients/

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