European Rare Kidney Disease Reference Network

European Rare Kidney Disease Reference Network ERKNet is devoted to improving the lives of patients with rare kidney diseases.

Annual Meeting Session III - ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐ฒ ๐€๐œ๐ญ๐ข๐ฏ๐ข๐ญ๐ข๐ž๐ฌ: ๐Ž๐ฏ๐ž๐ซ๐ฏ๐ข๐ž๐ฐ ๐š๐ง๐ ๐”๐ฉ๐๐š๐ญ๐ž๐ฌOur next session on Tuesday, May 5th from 09:35 - ...
08/04/2026

Annual Meeting Session III - ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐ฒ ๐€๐œ๐ญ๐ข๐ฏ๐ข๐ญ๐ข๐ž๐ฌ: ๐Ž๐ฏ๐ž๐ซ๐ฏ๐ข๐ž๐ฐ ๐š๐ง๐ ๐”๐ฉ๐๐š๐ญ๐ž๐ฌ

Our next session on Tuesday, 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 ๐Ÿ‘€

Want to ๐Ÿ๐จ๐ฅ๐ฅ๐จ๐ฐ ๐š๐ฅ๐จ๐ง๐  ๐ฏ๐ข๐ซ๐ญ๐ฎ๐š๐ฅ๐ฅ๐ฒ? Register here:
๐Ÿ”— https://tinyurl.com/2tmenbey

Annual Meeting Session II - ๐‰๐€๐‘๐ƒ๐ˆ๐ ๐Ž๐ฎ๐ญ๐œ๐จ๐ฆ๐ž๐ฌ ๐š๐ง๐ ๐ˆ๐ฆ๐ฉ๐ฅ๐ž๐ฆ๐ž๐ง๐ญ๐š๐ญ๐ข๐จ๐ง ๐ข๐ง๐ญ๐จ ๐๐š๐ญ๐ข๐จ๐ง๐š๐ฅ ๐‡๐ž๐š๐ฅ๐ญ๐ก ๐’๐ฒ๐ฌ๐ญ๐ž๐ฆOur next session on Tuesday, M...
07/04/2026

Annual Meeting Session II - ๐‰๐€๐‘๐ƒ๐ˆ๐ ๐Ž๐ฎ๐ญ๐œ๐จ๐ฆ๐ž๐ฌ ๐š๐ง๐ ๐ˆ๐ฆ๐ฉ๐ฅ๐ž๐ฆ๐ž๐ง๐ญ๐š๐ญ๐ข๐จ๐ง ๐ข๐ง๐ญ๐จ ๐๐š๐ญ๐ข๐จ๐ง๐š๐ฅ ๐‡๐ž๐š๐ฅ๐ญ๐ก ๐’๐ฒ๐ฌ๐ญ๐ž๐ฆ

Our next session on Tuesday, May 5th from 09:00 - 09:35 CET, chimes in a day full of interesting talks.
Here we showcase how collaborative European efforts are shaping measurable outcomes, structured care pathways, and scalable integration strategies for rare kidney diseases ๐Ÿ‡ช๐Ÿ‡บ

Want to ๐Ÿ๐จ๐ฅ๐ฅ๐จ๐ฐ ๐š๐ฅ๐จ๐ง๐  ๐ฏ๐ข๐ซ๐ญ๐ฎ๐š๐ฅ๐ฅ๐ฒ? Register here:
๐Ÿ”— https://tinyurl.com/2tmenbey

Annual Meeting Session I - ๐ƒ๐ข๐š๐ ๐ง๐จ๐ฌ๐ญ๐ข๐œ๐ฌ ๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐Ÿ๐จ๐ซ ๐”๐ง๐ฌ๐จ๐ฅ๐ฏ๐ž๐ ๐๐š๐ญ๐ข๐ž๐ง๐ญ๐ฌWe're starting out strong with our first session on...
02/04/2026

Annual Meeting Session I - ๐ƒ๐ข๐š๐ ๐ง๐จ๐ฌ๐ญ๐ข๐œ๐ฌ ๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐Ÿ๐จ๐ซ ๐”๐ง๐ฌ๐จ๐ฅ๐ฏ๐ž๐ ๐๐š๐ญ๐ข๐ž๐ง๐ญ๐ฌ

We're starting out strong with our first session on Monday, May 4th from 15:35 - 16:00 CET.
A discussion on how we can improve diagnosis for patients who remain without answers ๐Ÿ‘ฅ

Want to follow along virtually?
Register here: https://tinyurl.com/2tmenbey

๐Ÿ‡ซ๐Ÿ‡ท A postcard from Lyon just arrivedโ€ฆOnly 5 weeks to go until our ERKNet Annual Meeting and weโ€™re getting close.The inte...
31/03/2026

๐Ÿ‡ซ๐Ÿ‡ท A postcard from Lyon just arrivedโ€ฆ

Only 5 weeks to go until our ERKNet Annual Meeting and weโ€™re getting close.
The interest this year has been overwhelming, and we are fully booked onsite.

In Lyon, weโ€™ll be welcoming around 150 participants from 60 centres across 18 countries.
We wish we could host everyone in person, but virtual attendance will be available.
๐Ÿ”— https://www.erknet.org/events/10th-erknet-annual-meeting-2026-lyon-virtual

Over the next few weeks, expect a few more postcards from us with whatโ€™s waiting for you in Lyon ๐Ÿ’™

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ท๐Ÿ‡ดAt the Bucharest Fundeni Clinical Institute, Franzi spent five days supporting ERKReg data en...
24/03/2026

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ท๐Ÿ‡ด

At the Bucharest Fundeni Clinical Institute, Franzi spent five days supporting ERKReg data entry and exchanging ideas to improve the registry. Vฤƒ mulศ›umim mult pentru ospitalitate ๐Ÿ’™๐Ÿ’›โค๏ธ๐Ÿ“Š

๐Ÿ“ข We have some ๐ง๐ž๐ฐ ๐–๐ž๐›๐ข๐ง๐š๐ซ๐ฌ coming your way in April!Topic: ๐‚๐ข๐ง๐š๐œ๐š๐ฅ๐œ๐ž๐ญ ๐ข๐ง ๐๐ข๐š๐ฅ๐ฒ๐ฌ๐ข๐ฌ ๐š๐ง๐ ๐›๐ž๐ฅ๐จ๐ฐ 3 ๐ฒ๐ž๐š๐ซ๐ฌ ๐จ๐Ÿ ๐š๐ ๐ž ๐š๐ง๐ ๐š๐Ÿ๐ญ๐ž๐ซ ๐“๐ฑ...
16/03/2026

๐Ÿ“ข We have some ๐ง๐ž๐ฐ ๐–๐ž๐›๐ข๐ง๐š๐ซ๐ฌ coming your way in April!

Topic: ๐‚๐ข๐ง๐š๐œ๐š๐ฅ๐œ๐ž๐ญ ๐ข๐ง ๐๐ข๐š๐ฅ๐ฒ๐ฌ๐ข๐ฌ ๐š๐ง๐ ๐›๐ž๐ฅ๐จ๐ฐ 3 ๐ฒ๐ž๐š๐ซ๐ฌ ๐จ๐Ÿ ๐š๐ ๐ž ๐š๐ง๐ ๐š๐Ÿ๐ญ๐ž๐ซ ๐“๐ฑ
๐Ÿ—“๏ธ Date: 14 April
๐Ÿ•“ Time: 4 - 5 PM CET
๐Ÿ—ฃ๏ธ Speakers: Julie Bernador (France)
๐Ÿ“ Moderator: Claus Schmitt (Germany)

Together with ESPN - European Society for Paediatric Nephrology

Registration Link: https://register.gotowebinar.com/register/8850170754400520288

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

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ณ๐Ÿ‡ฑAt the ๐€๐ฆ๐ฌ๐ญ๐ž๐ซ๐๐š๐ฆ ๐€๐œ๐š๐๐ž๐ฆ๐ข๐œ ๐”๐ง๐ข๐ฏ๐ž๐ซ๐ฌ๐ข๐ญ๐ฒ ๐Œ๐ž๐๐ข๐œ๐š๐ฅ ๐‚๐ž๐ง๐ญ๐ž๐ซ (๐€๐”๐Œ๐‚), Franzi spent a couple of days sup...
05/03/2026

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ณ๐Ÿ‡ฑ

At the ๐€๐ฆ๐ฌ๐ญ๐ž๐ซ๐๐š๐ฆ ๐€๐œ๐š๐๐ž๐ฆ๐ข๐œ ๐”๐ง๐ข๐ฏ๐ž๐ซ๐ฌ๐ข๐ญ๐ฒ ๐Œ๐ž๐๐ข๐œ๐š๐ฅ ๐‚๐ž๐ง๐ญ๐ž๐ซ (๐€๐”๐Œ๐‚), Franzi spent a couple of days supporting ERKReg data entry and exchanging ideas to improve the registry. Hartelijk dank voor de fijne tijd โค๏ธ๐Ÿค๐Ÿ’™๐Ÿ“Š

ERNs coming together to discuss ๐ญ๐ซ๐š๐ง๐ฌ๐ข๐ญ๐ข๐จ๐ง ๐ข๐ง ๐ซ๐š๐ซ๐ž ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿš€Today concludes Day 1 of this workshop with a focus on shap...
27/02/2026

ERNs coming together to discuss ๐ญ๐ซ๐š๐ง๐ฌ๐ข๐ญ๐ข๐จ๐ง ๐ข๐ง ๐ซ๐š๐ซ๐ž ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿš€

Today concludes Day 1 of this workshop with a focus on shaping the future of ๐ข๐ง๐ญ๐ž๐ ๐ซ๐š๐ญ๐ž๐ ๐ญ๐ซ๐š๐ง๐ฌ๐ข๐ญ๐ข๐จ๐ง ๐ฉ๐š๐ญ๐ก๐ฐ๐š๐ฒ๐ฌ in beautiful Gent ๐Ÿ‡ง๐Ÿ‡ช
Our ERKNet team was on site to actively contribute to the process.

The programme included:
โ€ข An overview of preparatory activities and the workshop methodology
โ€ข A powerful patient perspective from the Youth Panel
โ€ข Insights into the meso and macro healthcare landscape
โ€ข Discussions on integrated care and case management

The afternoon will be highly interactive, with hands-on workshops on:
๐Ÿ”น Journey mapping
๐Ÿ”น Defining minimal criteria
๐Ÿ”น Prioritisation and valorisation

We hope to build a sustainable transition framework together.
Thank you to ERN RARE-LIVER for organizing this important event!

Highlighting our ๐„๐‘๐Š๐๐ž๐ญ ๐’๐ฎ๐ซ๐ฏ๐ž๐ฒ๐ฌ ๐Ÿ“ The Working Groups of ERKNet regularly conduct online surveys to address ๐ฌ๐ฉ๐ž๐œ๐ข๐Ÿ๐ข๐œ ๐ซ๐ž๐ฌ๐ž...
26/02/2026

Highlighting our ๐„๐‘๐Š๐๐ž๐ญ ๐’๐ฎ๐ซ๐ฏ๐ž๐ฒ๐ฌ ๐Ÿ“

The Working Groups of ERKNet regularly conduct online surveys to address ๐ฌ๐ฉ๐ž๐œ๐ข๐Ÿ๐ข๐œ ๐ซ๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐ช๐ฎ๐ž๐ฌ๐ญ๐ข๐จ๐ง๐ฌ ๐ข๐ง ๐ข๐ง๐๐ข๐ฏ๐ข๐๐ฎ๐š๐ฅ ๐ซ๐š๐ซ๐ž ๐ค๐ข๐๐ง๐ž๐ฒ ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ. This format has proven highly successful, enabling rapid data collection from large numbers of patients with rare conditions. Surveys are set up and circulated by the ERKNet Central Office via the ERKNet member mailing list.

So far, 37 surveys have been completed.
๐Ÿ”น 14 have already resulted in publications
๐Ÿ”น 13 are currently in data analysis and manuscript preparation
๐Ÿ”น 12 are actively open and collecting data

All projects are approved by Working Group Chairs in line with our SOP. Several have been endorsed by ESPN - European Society for Paediatric Nephrology and European Renal Association (ERA), underlining their scientific relevance and impact.

Keep an eye out for new surveys and opportunities to participate ๐Ÿ‘€
๐Ÿ”— https://www.erknet.org/research/erknet-surveys

๐ŸŒŸMeet Simge Celik Stojanovic - Project- and Patient Engagement Manager ๐ŸŒŸHaving Simge in the office has been an absolute ...
17/02/2026

๐ŸŒŸMeet Simge Celik Stojanovic - Project- and Patient Engagement Manager ๐ŸŒŸ

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 ๐Ÿ‡น๐Ÿ‡ท

๐Ÿ“ข Our ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ highlight in March!Topic: ๐†๐ฎ๐ข๐๐ž๐ฅ๐ข๐ง๐ž ๐จ๐ง ๐ญ๐ก๐ž ๐ƒ๐ข๐š๐ ๐ง๐จ๐ฌ๐ข๐ฌ ๐š๐ง๐ ๐Œ๐š๐ง๐š๐ ๐ž๐ฆ๐ž๐ง๐ญ ๐จ๐Ÿ ๐‚๐š๐ซ๐๐ข๐จ๐ฏ๐š๐ฌ๐œ๐ฎ๐ฅ๐š๐ซ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž ๐ข๐ง ๐‚๐ก...
16/02/2026

๐Ÿ“ข Our ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ highlight in March!

Topic: ๐†๐ฎ๐ข๐๐ž๐ฅ๐ข๐ง๐ž ๐จ๐ง ๐ญ๐ก๐ž ๐ƒ๐ข๐š๐ ๐ง๐จ๐ฌ๐ข๐ฌ ๐š๐ง๐ ๐Œ๐š๐ง๐š๐ ๐ž๐ฆ๐ž๐ง๐ญ ๐จ๐Ÿ ๐‚๐š๐ซ๐๐ข๐จ๐ฏ๐š๐ฌ๐œ๐ฎ๐ฅ๐š๐ซ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž ๐ข๐ง ๐‚๐ก๐ซ๐จ๐ง๐ข๐œ ๐Š๐ข๐๐ง๐ž๐ฒ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž
๐Ÿ—“๏ธ Date: 10 March
๐Ÿ•“ Time: 4 - 5 PM CET
๐Ÿ—ฃ๏ธ Speakers: Rukshana Shroff (UK) & Stella Stabouli (Greece)
๐Ÿ“ Moderator: Marina Vivarelli (Italy)

Together with ESPN - European Society for Paediatric Nephrology

๐Ÿ”— Registration Link: https://register.gotowebinar.com/register/4541782818544301911

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ฎ๐Ÿ‡นAt the Genoa Istituto Giannina Gaslini, Franzi spent four days supporting ERKReg data entry a...
12/02/2026

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ฎ๐Ÿ‡น

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 ๐Ÿ’š๐Ÿคโค๏ธ๐Ÿ“Š

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