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.

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

๐Ÿ“ข And the last ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ in February!Topic: ๐๐”๐• (๐๐จ๐ฌ๐ญ๐ž๐ซ๐ข๐จ๐ซ ๐”๐ซ๐ž๐ญ๐ก๐ซ๐š๐ฅ ๐•๐š๐ฅ๐ฏ๐ž๐ฌ)๐Ÿ—“๏ธ Date: 24 February๐Ÿ•“ Time: 4 - 5 PM CET...
28/01/2026

๐Ÿ“ข And the last ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ in February!

Topic: ๐๐”๐• (๐๐จ๐ฌ๐ญ๐ž๐ซ๐ข๐จ๐ซ ๐”๐ซ๐ž๐ญ๐ก๐ซ๐š๐ฅ ๐•๐š๐ฅ๐ฏ๐ž๐ฌ)
๐Ÿ—“๏ธ Date: 24 February
๐Ÿ•“ Time: 4 - 5 PM CET
๐Ÿ—ฃ๏ธ Speaker: Michaล‚ Maternik
๐Ÿ“ Moderator: Jens Kรถnig

Together with ESPN - European Society for Paediatric Nephrology

๐Ÿ”— Register here: https://register.gotowebinar.com/register/5221588867765388886

Find all Webinars here: https://www.erknet.org/education-training/next-webinars

๐Ÿ“ข ๐‚๐š๐ฅ๐ฅ ๐Ÿ๐จ๐ซ ๐€๐›๐ฌ๐ญ๐ซ๐š๐œ๐ญ๐ฌ - ERKNet Annual Meeting 2026 ๐Ÿ“ข ERKNet members only:The ERKNet Annual Meeting 2026 will feature a de...
27/01/2026

๐Ÿ“ข ๐‚๐š๐ฅ๐ฅ ๐Ÿ๐จ๐ซ ๐€๐›๐ฌ๐ญ๐ซ๐š๐œ๐ญ๐ฌ - ERKNet Annual Meeting 2026 ๐Ÿ“ข

ERKNet members only:
The ERKNet Annual Meeting 2026 will feature a dedicated sessions highlighting ๐œ๐ฎ๐ซ๐ซ๐ž๐ง๐ญ ๐ซ๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐ข๐ง ๐ซ๐š๐ซ๐ž ๐ค๐ข๐๐ง๐ž๐ฒ ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ. These sessions aim to showcase innovative scientific work, promote exchange across disciplines, and stimulate discussion within the ERKNet community ๐Ÿ’ก

ERKNet is pleased to announce that all selected oral presenters will receive a travel fellowship to support their participation in the meeting from May 04th - 06th 2026 in Lyon ๐Ÿ‡จ๐Ÿ‡ต

If you are interested, please ๐ฌ๐ฎ๐›๐ฆ๐ข๐ญ ๐ฒ๐จ๐ฎ๐ซ ๐š๐›๐ฌ๐ญ๐ซ๐š๐œ๐ญ ๐›๐ฒ ๐…๐ž๐›๐ซ๐ฎ๐š๐ซ๐ฒ 08๐ญ๐ก!
๐Ÿ”— More info: https://www.erknet.org/events/10th-erknet-annual-meeting-2026-lyon-virtual/call-for-abstracts

๐Ÿ“ข Next ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ!Join us for our next webinar, together with ERA๐Ÿ’ป Topic: ๐€๐ฎ๐ญ๐จ๐ข๐ฆ๐ฆ๐ฎ๐ง๐ž ๐“๐ฎ๐›๐ฎ๐ฅ๐จ๐ฉ๐š๐ญ๐ก๐ข๐ž๐ฌ๐Ÿ—“๏ธ Date: 10 Februa...
26/01/2026

๐Ÿ“ข Next ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ!

Join us for our next webinar, together with ERA

๐Ÿ’ป Topic: ๐€๐ฎ๐ญ๐จ๐ข๐ฆ๐ฆ๐ฎ๐ง๐ž ๐“๐ฎ๐›๐ฎ๐ฅ๐จ๐ฉ๐š๐ญ๐ก๐ข๐ž๐ฌ
๐Ÿ—“๏ธ Date: 10 February
๐Ÿ•“ Time: 4 - 5 PM CET
๐Ÿ—ฃ๏ธ Speaker: Rhys Evans

๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ž๐ซ here: https://register.gotowebinar.com/register/8019781089269025626

๐Ÿ’™ ๐“๐ก๐ž ๐„๐‘๐Š๐๐ž๐ญ ๐“๐ž๐š๐ฆ Through growing projects, challenges and opportunities follows a growing team. Some of you have been b...
22/01/2026

๐Ÿ’™ ๐“๐ก๐ž ๐„๐‘๐Š๐๐ž๐ญ ๐“๐ž๐š๐ฆ

Through growing projects, challenges and opportunities follows a growing team. Some of you have been by our side since the start, when the team consisted of only two people - Tanja and Franz, and some of you might be our newest followers.
(Thank you! ๐Ÿ˜‰)

As our coordination office grows, we wanted to take this chance to update you on all our responsibilities and show a face behind each name

(left to right)
Back Row:
Tanja Wlodkowski - ERKNet Project Manager and veteran since 2018
Giulia Bassanese - CompCure Projektmanager since 2022 and part of our team as a Pediatrician since 2019
Jose Ramรญrez - ERKNet Data Scientist and Project Manager since 2022

3rd Row:
Jonas Hofstetter - ERKNet Biostatistician since 2023
Carol Barahona Ponce - ERKNet and ERDERA Project Manager since 2025
Vanessa Merck - ERKNet Project Manager since 2024
Anna Kefala - ERDERA and RealiseD_ihi Project Manager since 2025

2nd Row:
Stefanie Hรคberle - ERKNet Project Manager since 2020
Ariel Weingarten - ERNet Biostatistician since 2025
Mathias Hรคberle - ERKNet and ERDERA Web Developer since 2025 and part of our team as a student assistant since 2022

Front Row:
Franz Schaefer - ERKNet Coordinator since 2017
Anna Dengler - ERKNet Project Assistant and Social Media Manager since 2023
Yara Hodeib - ERKNet Student Assistant since 2024
Sheila Murunga - PICKED Project - Personalized Medicine in Chronic Kidney Disease MSCA PhD Researcher since 2024
Aleyna ร–tztรผrk - EKRNet Student Assistant since 2025

Next to Stairs:
Johannes Trapp - PICKED and PRECISEU Project Manager since 2024
Eyal Rahmani - ERKNet Pediatrician and Researcher since 2023
Valentina Neukel - ERKNet ePAG Manager and JARDIN Joint Action Project Manager since 2024 and student assistance since 2021 (currently on maternity leave)

not pictured:
Simge Celik Stojanovic, PhD - ERKNet ePAG Manager and JARDIN Project Manager since 2025 (maternity leave replacement for Valentina)

You can find a detailed introduction of everyone on our website: https://lnkd.in/e2hz2tCn

We are happy to share this journey with each of you. This might be our coordination office, but we are all part of the ERKNet team ๐Ÿคฒ

๐Ÿ“ข Next ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ together with MetabERN!Topic: ๐“๐ซ๐ž๐š๐ญ๐ฆ๐ž๐ง๐ญ ๐ฐ๐ข๐ญ๐ก ๐’๐†๐‹๐“2 ๐ข๐ง๐ก๐ข๐›๐ข๐ญ๐จ๐ซ๐ฌ ๐ข๐ง ๐ฉ๐š๐ญ๐ข๐ž๐ง๐ญ๐ฌ ๐ฐ๐ข๐ญ๐ก ๐…๐š๐ง๐œ๐จ๐ง๐ข-๐๐ข๐œ๐ค๐ž๐ฅ ๐’๐ฒ๐ง๐...
20/01/2026

๐Ÿ“ข Next ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ together with MetabERN!

Topic: ๐“๐ซ๐ž๐š๐ญ๐ฆ๐ž๐ง๐ญ ๐ฐ๐ข๐ญ๐ก ๐’๐†๐‹๐“2 ๐ข๐ง๐ก๐ข๐›๐ข๐ญ๐จ๐ซ๐ฌ ๐ข๐ง ๐ฉ๐š๐ญ๐ข๐ž๐ง๐ญ๐ฌ ๐ฐ๐ข๐ญ๐ก ๐…๐š๐ง๐œ๐จ๐ง๐ข-๐๐ข๐œ๐ค๐ž๐ฅ ๐’๐ฒ๐ง๐๐ซ๐จ๐ฆ๐ž
Organization Team: Francesco Trepiccione, Martine Besouw, Sarah Grรผnert, Terry Derks, Andrea Haijer-Schreuder
Registration: dfa344ab-1644-41c5-a1a7-dc8ff6243f9e@335122f9-d4f4-4d67-a2fc-cd6dc20dde70" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/dfa344ab-1644-41c5-a1a7-dc8ff6243f9e@335122f9-d4f4-4d67-a2fc-cd6dc20dde70

We are also performing a ๐ซ๐ž๐ญ๐ซ๐จ๐ฌ๐ฉ๐ž๐œ๐ญ๐ข๐ฏ๐ž ๐ฌ๐ญ๐ฎ๐๐ฒ ๐จ๐ง ๐ญ๐ก๐ข๐ฌ ๐ญ๐จ๐ฉ๐ข๐œ. We invite you to contribute your experiences via survey monkey (should take 5 minutes per treated patient). Of course your efforts will be acknowledged with a co-authorship on the planned publication (depending on the number of co-authors probably via a collaborating group where your authorship is still visible in PubMed and on the article).
๐Ÿ”— ๐ฅ๐ข๐ง๐ค ๐ญ๐จ ๐’๐ฎ๐ซ๐ฏ๐ž๐ฒ๐Œ๐จ๐ง๐ค๐ž๐ฒ https://www.surveymonkey.com/r/GMPSP6C

๐Ÿ“ข ๐”๐ฉ๐œ๐จ๐ฆ๐ข๐ง๐  ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ!Join us for our next webinar, together with ESPN and ERA๐Ÿ’ป Topic: ๐๐ž๐ฐ ๐ˆ๐ง๐ฌ๐ข๐ ๐ก๐ญ๐ฌ ๐ข๐ง๐ญ๐จ ๐ญ๐ก๐ž ๐๐š๐ญ๐ก๐จ๐ฉ๐ก...
16/01/2026

๐Ÿ“ข ๐”๐ฉ๐œ๐จ๐ฆ๐ข๐ง๐  ๐„๐‘๐Š๐๐ž๐ญ ๐–๐ž๐›๐ข๐ง๐š๐ซ!

Join us for our next webinar, together with ESPN and ERA

๐Ÿ’ป Topic: ๐๐ž๐ฐ ๐ˆ๐ง๐ฌ๐ข๐ ๐ก๐ญ๐ฌ ๐ข๐ง๐ญ๐จ ๐ญ๐ก๐ž ๐๐š๐ญ๐ก๐จ๐ฉ๐ก๐ฒ๐ฌ๐ข๐จ๐ฅ๐จ๐ ๐ฒ ๐จ๐Ÿ ๐ˆ๐๐ข๐จ๐ฉ๐š๐ญ๐ก๐ข๐œ ๐๐ž๐ฉ๐ก๐ซ๐จ๐ญ๐ข๐œ ๐’๐ฒ๐ง๐๐ซ๐จ๐ฆ๐ž
๐Ÿ—“๏ธ Date: 27 January
๐Ÿ•“ Time: 4 - 5 PM CET
๐Ÿ—ฃ๏ธ Speaker: Felicitas Hengel

Register here: https://register.gotowebinar.com/register/3410840553061000543

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