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.

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!

01/05/2026

Annual Meeting WG Session III - 𝐓𝐮𝐛𝐮𝐥𝐨𝐩𝐚𝐭𝐡𝐢𝐞𝐬

As every year, we take the opportunity to hold our working group sessions on site during the annual meeting. It's a wonderful chance for everyone to get together, see each other again and 𝐝𝐢𝐬𝐜𝐮𝐬𝐬 𝐦𝐚𝐭𝐭𝐞𝐫𝐬 𝐢𝐧 𝐩𝐞𝐫𝐬𝐨𝐧 👥

Our third and final WG session will take place on Wednesday, May 6th from 08:00 - 10:00 CET, which includes the 𝐓𝐮𝐛𝐮𝐥𝐨𝐩𝐚𝐭𝐡𝐢𝐞𝐬 WG

We're looking forward to welcoming our chair, co-chairs and ePAGs on site, as well as all of our other WG members.

🔗 Check out more info here: https://lnkd.in/d-SajMjc

30/04/2026

Annual Meeting - 𝐁𝐞𝐬𝐭 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐀𝐛𝐬𝐭𝐫𝐚𝐜𝐭 𝐒𝐞𝐬𝐬𝐢𝐨𝐧

After numerous submissions, we are also very excited to announce our best research abstract presenters. This session will be on Tuesday, May 5th from 17:00 - 18:30 CET 📝

We're looking forward to welcoming everyone on site:
🔹 Anahita Noruzi - Effects of Sodium Loading and Amiloride on Vascular Stiffness in ADPKD: A Randomized Trial
🔹 Elena Levtchenko - Ketogenic Diet Improves Proximal Tubular Dysfunction in Cystinosis: Patient One Study
🔹 Adria Tinoco - Preimplantation Genetic Testing: Clinical Outcomes and Liver Disease Assessment in Women with ADPKD
🔹 Louis Lebreton - Diagnostic Yield and Clinical Impact of Whole Genome Sequencing in Rare Kidney Diseases: Experience from the French Genomic Medicine Plan (Auragen Laboratory)
🔹 Idris Boudhabhay - Renal and Systemic Natural History of Patients with Genetically Confirmed CGS
🔹 Bertrand Knebelmann - Renal Trajectories in the French RaDiCo Alport Syndrome Cohort
🔹 Shohdan Osman - Impact of Intracranial Aneurysm Screening on Subarachnoid Hemorrhage in Autosomal Dominant Polycystic Kidney Disease ICICA-ADPKD
🔹Eloïse Colliou - ARPKD with Late Onset in Adulthood: Hepatorenal Phenotype, Genotype- Phenotype Correlation and Long Term Outcome
🔹 Theresa Buhmann - Genotype-Phenotype Correlations in GANAB-Associated Autosomal Dominant Polycystic Kidney and Liver Disease

You can also 𝐟𝐨𝐥𝐥𝐨𝐰 𝐚𝐥𝐨𝐧𝐠 𝐯𝐢𝐫𝐭𝐮𝐚𝐥𝐥𝐲 during our Annual Meeting! Register here:
🔗 https://lnkd.in/es6mpUKz

29/04/2026

Annual Meeting Session VI - 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐓𝐫𝐢𝐚𝐥 𝐑𝐞𝐚𝐝𝐢𝐧𝐞𝐬𝐬 𝐢𝐧 𝐍𝐞𝐩𝐡𝐫𝐨𝐥𝐨𝐠𝐲

We wrap up our Annual Meeting with the last plenary session on Wednesday, May 6th from 10:30 - 13:00 CET, moderated by Olivia Boyer. It's definitely one you don't want to miss💡

𝐊𝐞𝐲 𝐭𝐨𝐩𝐢𝐜𝐬 include
🔹 Improving patient recruitment strategies (Anna Kefala)
🔹 Facilitating cross-border patient referral for trials (Carolina de la Fuente)
🔹 And funding opportunities for therapeutic research through ERDERA (Florence G.)
🔹 We will also explore the role of specialised trial networks (Ana Crespo)
🔹 And gain an overview of the current and future clinical trial landscape in rare kidney diseases (Gema Ariceta)

Want to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐚𝐥𝐨𝐧𝐠 𝐯𝐢𝐫𝐭𝐮𝐚𝐥𝐥𝐲? Register here:
🔗 https://lnkd.in/es6mpUKz

28/04/2026

Annual Meeting WG Session III - 𝐂𝐀𝐊𝐔𝐓 & 𝐂𝐢𝐥𝐢𝐨𝐩𝐚𝐭𝐡𝐢𝐞𝐬

As every year, we take the opportunity to hold our working group sessions on site during the annual meeting. It's a wonderful chance for everyone to get together, see each other again and 𝐝𝐢𝐬𝐜𝐮𝐬𝐬 𝐦𝐚𝐭𝐭𝐞𝐫𝐬 𝐢𝐧 𝐩𝐞𝐫𝐬𝐨𝐧 👥

Our third and final WG session will take place on Wednesday, May 6th from 08:00 - 10:00 CET, which includes the 𝐂𝐨𝐧𝐠𝐞𝐧𝐢𝐭𝐚𝐥 𝐌𝐚𝐥𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧𝐬 & 𝐂𝐢𝐥𝐢𝐨𝐩𝐚𝐭𝐡𝐢𝐞𝐬 WG

We're looking forward to welcoming our chair, co-chairs and ePAGs on site, as well as all of our other WG members.

🔗 Check out more info here: https://www.erknet.org/our-experts/expert-work-groups/renal-malformations

27/04/2026

Annual Meeting Session V - 𝐓𝐚𝐬𝐤 𝐅𝐨𝐫𝐜𝐞 𝐔𝐩𝐝𝐚𝐭𝐞𝐬

It's our last plenary session on Tuesday, May 5th from 16:40 - 17:00 CET, and we're hearing some important input from two of our Task Forces 💡

Karsten Vanden Wyngaert starts off with giving an update on the ongoing work for our Transition Task Force, including a Transition Passport Survey.
Jan Ulrich Becker continues with sharing insights from the recent 𝐍𝐞𝐩𝐡𝐫𝐨𝐩𝐚𝐭𝐡𝐨𝐥𝐨𝐠𝐲 𝐖𝐨𝐫𝐤𝐬𝐡𝐨𝐩, for which there is still time to register!
Join the Workshop on April 30th here: https://www.erknet.org/education-training/upcoming-cme-courses

You can also 𝐟𝐨𝐥𝐥𝐨𝐰 𝐚𝐥𝐨𝐧𝐠 𝐯𝐢𝐫𝐭𝐮𝐚𝐥𝐥𝐲 during our Annual Meeting? Register here:
🔗 https://docs.google.com/forms/d/e/1FAIpQLSfpS1cuLbBetqbG8afRx__UPNjIS44E3MBMYaFE6g3M3g-SIw/viewform

24/04/2026

Annual Meeting WG Session II - 𝐀𝐃 𝐒𝐭𝐫𝐮𝐜𝐭𝐮𝐫𝐚𝐥 𝐊𝐢𝐝𝐧𝐞𝐲 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬

As every year, we take the opportunity to hold our working group sessions on site during the annual meeting. It's a wonderful chance for everyone to get together, see each other again and 𝐝𝐢𝐬𝐜𝐮𝐬𝐬 𝐦𝐚𝐭𝐭𝐞𝐫𝐬 𝐢𝐧 𝐩𝐞𝐫𝐬𝐨𝐧 👥

Our second WG session will take place on Tuesday, May 5th from 14:15 - 16:15 CET, which includes the 𝐀𝐮𝐭𝐨𝐬𝐨𝐦𝐚𝐥 𝐝𝐨𝐦𝐢𝐧𝐚𝐧𝐭 𝐬𝐭𝐫𝐮𝐜𝐭𝐮𝐫𝐚𝐥 𝐤𝐢𝐝𝐧𝐞𝐲 𝐝𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬 WG

We're looking forward to welcoming our chair, co-chairs and ePAGs on site, as well as all of our other WG members.

🔗 Check out more info here https://www.erknet.org/our-experts/expert-work-groups/ad-structural-kidney-disorders

23/04/2026

Annual Meeting Session IV - 𝐀𝐓𝐌𝐏𝐬 𝐢𝐧 𝐍𝐞𝐩𝐡𝐫𝐨𝐥𝐨𝐠𝐲 - 𝐏𝐭. 2

Our session on Tuesday, May 5th from 11:30 - 13:15 CET, moderated by Elena Levtchenko, continues to give a closer look into groundbreaking new opportunities for the treatment of diseases 💡

Don't miss Moin Saleems presentation on "Gene Therapy", Justine Bacchettas talk "RNA Therapies in Primary Hyperoxaluria" and, closing off, insights into "Cell Therapies" (TBD) 🌐

Want to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐚𝐥𝐨𝐧𝐠 𝐯𝐢𝐫𝐭𝐮𝐚𝐥𝐥𝐲? Register here:
🔗 https://lnkd.in/es6mpUKz

22/04/2026

Annual Meeting WG Session II - 𝐈𝐦𝐦𝐮𝐧𝐞 𝐆𝐏

As every year, we take the opportunity to hold our working group sessions on site during the annual meeting. It's a wonderful chance for everyone to get together, see each other again and 𝐝𝐢𝐬𝐜𝐮𝐬𝐬 𝐦𝐚𝐭𝐭𝐞𝐫𝐬 𝐢𝐧 𝐩𝐞𝐫𝐬𝐨𝐧 👥

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

We're looking forward to welcoming our chair, co-chairs and ePAGs on site, as well as all of our other WG members.
Claire Dossier, Jürgen Floege, Dieter Haffner, Johanna Rohlfing

🔗 Check out more info here https://www.erknet.org/our-experts/expert-work-groups/immune-glomerulopathies

Adresse

Im Neuenheimer Feld 130. 3
Heidelberg
69120

Webseite

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

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