European Rare Kidney Disease Reference Network

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European Rare Kidney Disease Reference Network

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

15/10/2026

🎓 Reminder: The 7𝐭𝐡 𝐄𝐑𝐊𝐍𝐞𝐭 𝐏𝐨𝐬𝐭𝐠𝐫𝐚𝐝𝐮𝐚𝐭𝐞 𝐂𝐮𝐫𝐫𝐢𝐜𝐮𝐥𝐮𝐦 in Rare Kidney Diseases is now open! - 𝐄𝐑𝐊𝐍𝐞𝐭 𝐦𝐞𝐦𝐛𝐞𝐫𝐬 𝐨𝐧𝐥𝐲

From 15 January 2027 to 15 December 2029, the three-year programme will go in its 7th round, offering structured training in rare kidney diseases.

The curriculum combines 𝐜𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐭𝐫𝐚𝐢𝐧𝐢𝐧𝐠 𝐚𝐭 𝐄𝐑𝐊𝐍𝐞𝐭 𝐜𝐞𝐧𝐭𝐫𝐞𝐬, 𝐢𝐧𝐭𝐞𝐫𝐚𝐜𝐭𝐢𝐯𝐞 𝐰𝐞𝐛𝐢𝐧𝐚𝐫𝐬, 𝐚𝐧𝐝 𝐞-𝐥𝐞𝐚𝐫𝐧𝐢𝐧𝐠 𝐜𝐚𝐬𝐞𝐬. Successful participants receive the certificate European Specialist in Rare Kidney Diseases 🩺

Since 2021, 550+ healthcare professionals have registered, with 119 specialists already certified through the first three completed cohorts.

And we were happy to meet three of them participating at the Alport Syndrome Workshop in Budapest earlier this September 💙

📅 𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 𝐝𝐞𝐚𝐝𝐥𝐢𝐧𝐞: 31 October 2026

🔗 𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐦𝐨𝐫𝐞 𝐢𝐧𝐟𝐨: https://www.erknet.org/education-training/erknet-postgraduate-curriculum-in-rare-kidney-diseases

12/10/2026

📢 Get ready for our next Webinar coming up in November

Topic: 𝐍𝐞𝐩𝐡𝐫𝐨𝐩𝐚𝐭𝐡𝐢𝐜 𝐂𝐲𝐬𝐭𝐢𝐧𝐨𝐬𝐢𝐬
🗓️ Date: Tuesday, 03 November
🕓 Time: 4 - 5 PM CET
🗣️ Speaker: Katharina Hohenfellner (Germany)
🖥️ Moderator: tbd

👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: https://register.gotowebinar.com/register/4079845002538980184

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

08/10/2026

𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐨𝐩𝐭𝐢𝐨𝐧𝐬 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞 🔎

beyond our funded fellowships, we’re sharing extra self-funded projects you can still join. Today’s spotlight: 𝐆𝐥𝐲𝐜𝐨𝐬𝐲𝐥𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐃𝐞𝐧𝐭’𝐬 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐭𝐲𝐩𝐞 1.

🔗 Check out the pictures for the teaser and check our website for how to get involved: https://www.erknet.org/research/erknet-research-projects/projects-overview/dents-disease-type-1

02/10/2026

A few days full of pediatric nephrology, research and exchange at the 58th ESPN Annual Meeting!
We were very happy to be part of this year’s meeting and especially grateful to everyone who stopped by the ERKNet booth to say hello, exchange ideas and learn more about our work. 💙
We were also proud to see our network represented throughout the scientific programme:
🔹 Franz Schaefer – “Hereditary kidney diseases across life-span & emerging concepts” 🔹 Giulia Bassanese – “Serum C3 trajectories are associated with disease outcome in C3 glomerulopathy (C3G) and primary immune complex-mediated membranoproliferative glomerulonephritis (IC-MPGN)” 🔹 Sheila Murunga – “Urinary Albumin-to-Creatinine Associates More Closely than Protein-to-Creatinine Ratio with Kidney Outcomes in Pediatric Chronic Kidney Disease”
It was also great to see ERKReg being used by researchers and clinicians across Europe to support research in pediatric kidney diseases, with our registry data and cohorts featuring in several discussions throughout the meeting.“
Thank you to everyone who came by, shared their work and made this such a great opportunity to connect! 💙 ESPN - European Society for Paediatric Nephrology CompCure

25/09/2026

📬 The September 𝐄𝐑𝐊𝐍𝐞𝐭 𝐍𝐞𝐰𝐬𝐥𝐞𝐭𝐭𝐞𝐫 is out now!

What's inside?

👩‍👩‍👦‍👦 Info on the ERKNet Postgraduate Curriculum in Rare Kidney Diseases
📊 New surveys to participate in, such as "𝐒𝐓𝐄𝐂-𝐇𝐔𝐒: 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐏𝐫𝐞𝐬𝐞𝐧𝐭𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐓𝐫𝐞𝐚𝐭𝐦𝐞𝐧𝐭"
📖 Updates to the expressions of interest for the ERDERA clinical trial call
🤲 Infos on the upcoming 58th ESPN Annual Meeting in Bordeaux
🚀 Exciting updated on EU rare disease initiatives such as the HLM Meeting in December

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/

24/09/2026

📝 𝐒𝐮𝐫𝐯𝐞𝐲 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭 - Shared decision making in the prenatal diagnosis of CAKUT

We would like to highlight this running survey from Jeremy Power.
𝐃𝐢𝐬𝐜𝐥𝐚𝐢𝐦𝐞𝐫: This questionnaire is only for clinicians who contribute to prenatal decision making after CAKUT diagnosis

Jeremy Power is a PhD student at the Université de Toulouse under the supervision of Emmanuelle Rial-Sebbag. His research is part of the EU-funded PICKED Project - Personalized Medicine in Chronic Kidney Disease project (Project Coordinator: Julie Kein, INSERM; Grant Agreement No. 101168626) and focuses on the 𝐛𝐢𝐨𝐞𝐭𝐡𝐢𝐜𝐚𝐥 𝐜𝐡𝐚𝐥𝐥𝐞𝐧𝐠𝐞𝐬 𝐚𝐬𝐬𝐨𝐜𝐢𝐚𝐭𝐞𝐝 𝐰𝐢𝐭𝐡 𝐤𝐢𝐝𝐧𝐞𝐲 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬 🩺

As part of his PhD, Jeremy is investigating how 𝐝𝐢𝐚𝐠𝐧𝐨𝐬𝐭𝐢𝐜 𝐢𝐧𝐚𝐜𝐜𝐮𝐫𝐚𝐜𝐢𝐞𝐬 𝐦𝐚𝐲 𝐢𝐧𝐟𝐥𝐮𝐞𝐧𝐜𝐞 𝐝𝐞𝐜𝐢𝐬𝐢𝐨𝐧-𝐦𝐚𝐤𝐢𝐧𝐠 following a prenatal diagnosis of congenital anomalies of the kidney and urinary tract (CAKUT), including decisions regarding pregnancy management and further diagnostic testing.

To support this research, he is conducting a survey among clinicians involved in prenatal decision-making after a CAKUT diagnosis. The survey aims to 𝐜𝐨𝐥𝐥𝐞𝐜𝐭 𝐩𝐞𝐫𝐬𝐩𝐞𝐜𝐭𝐢𝐯𝐞𝐬 𝐟𝐫𝐨𝐦 𝐡𝐞𝐚𝐥𝐭𝐡𝐜𝐚𝐫𝐞 𝐩𝐫𝐨𝐟𝐞𝐬𝐬𝐢𝐨𝐧𝐚𝐥𝐬 𝐚𝐜𝐫𝐨𝐬𝐬 𝐄𝐮𝐫𝐨𝐩𝐞, which will be compared with interview data from clinicians, researchers, and patients to provide a comprehensive understanding of the ethical challenges in this field.

🔗 Find the survey here: https://enquetes.univ-tlse3.fr/579362?lang=en&utm_source=newsletter&utm_medium=email&utm_campaign=erknet_newsletter_news_updates_reminders_august_2026&utm_term=2026-08-28

💻 More info on this survey, and all additional running surveys can be found on our website: https://www.erknet.org/research/erknet-surveys

23/09/2026

🇧🇪 Looking back on the 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐕𝐨𝐢𝐜𝐞 𝐃𝐚𝐲 organized by PKD International in Leuven, which took place September 5th. It brought together patients, carers and advocates from multiple countries to share experiences and perspectives on living with PKD.

Several important themes stood out:

🔹 𝐏𝐬𝐲𝐜𝐡𝐨𝐥𝐨𝐠𝐢𝐜𝐚𝐥 𝐢𝐦𝐩𝐚𝐜𝐭 𝐨𝐟 𝐏𝐊𝐃
The discussion highlighted how living with a chronic illness can shape identity formation in young people, and how acceptance, rejection or engulfment of the illness may relate to depressive symptoms and the experience of disease symptoms.
🔹 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐭𝐫𝐢𝐚𝐥 𝐩𝐚𝐫𝐭𝐢𝐜𝐢𝐩𝐚𝐭𝐢𝐨𝐧
Discussions focused on the information patients need to make informed decisions about clinical trial participation, including what participation involves, potential risks and benefits, how their participation contributes to advancing research, and the importance of long-term adherence. Decisions are influenced by factors such as disease stage, urgency, personal risk tolerance and trust in the research team. For children and young people, protecting their voice and ensuring they are appropriately informed was particularly important.
🔹 ⁠𝐀𝐈 𝐚𝐧𝐝 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐬𝐮𝐩𝐩𝐨𝐫𝐭
The potential of AI to support people and families affected by PKD was discussed, including how better-designed prompts can help provide clearer information.

Our patient engagement manager Simge Celik Stojanovic was part of these important patient-centred conversations on site.

Thank you so much to PKD International, Flavia Galletti and Rachel Giles for organizing such a meaningful event and creating this space 💙

21/09/2026

📢 Next fall webinar coming up soon!

Topic: 𝐏𝐚𝐭𝐡𝐨𝐥𝐨𝐠𝐲 𝐨𝐟 𝐓𝐌𝐀
🗓️ Date: Tuesday, 06 October
🕓 Time: 4 - 5 PM CET
🗣️ Speaker: Jan Becker (Germany)
💡Moderator: tbd

👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: https://register.gotowebinar.com/register/4330196103602147671

See all upcoming webinars here: https://www.erknet.org/education-training/next-webinars

17/09/2026

🇪🇪 PICKED in Tallinn!

The PICKED community is getting together in Tallinn to share research, exchange ideas and look at how we can turn scientific discoveries into real-world impact. 🧬💡

The program combines scientific exchange with a strong focus on innovation and translation. Alongside updates from the PICKED doctoral candidates on topics such as urinary biomarkers and peptidomics, computational approaches, CKD progression, personalized treatment and clinical decision-making, the meeting also looks at what it takes to bring research beyond the lab 🔬

It's rounded off with sessions on entrepreneurship, intellectual property, precision medicine and translating research into practice

🔗 Fond more info here: https://www.projectpicked.eu

Wishing everyone a great final day!

07/09/2026

🇭🇺 Three days of 𝐀𝐥𝐩𝐨𝐫𝐭 𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞 in Budapest!

What an honor for ERKNet to be part of the 10th International Workshop on Alport Syndrome, from 5 - 7 of September, which brought together so many colleagues, patients, researchers and other stakeholders from across the world.

We were involved both through logistical and on-site support. We were also happy to see that many members of our network presented posters, talks or both 💙

We’re always happy to support our network and beyond in advancing patient care together. Sharing knowledge and ideas, and working towards the same goal of improving care for people living with rare kidney diseases has to be a collaborative effort 🤲

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