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.

๐Ÿ‡ญ๐Ÿ‡บ Three days of ๐€๐ฅ๐ฉ๐จ๐ซ๐ญ ๐’๐ฒ๐ง๐๐ซ๐จ๐ฆ๐ž in Budapest!What an honor for ERKNet to be part of the 10th International Workshop on A...
07/09/2026

๐Ÿ‡ญ๐Ÿ‡บ Three days of ๐€๐ฅ๐ฉ๐จ๐ซ๐ญ ๐’๐ฒ๐ง๐๐ซ๐จ๐ฆ๐ž 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 ๐Ÿ’™

Weโ€™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 ๐Ÿคฒ

๐ŸŽ“ The 7th ๐„๐‘๐Š๐๐ž๐ญ ๐๐จ๐ฌ๐ญ๐ ๐ซ๐š๐๐ฎ๐š๐ญ๐ž ๐‚๐ฎ๐ซ๐ซ๐ข๐œ๐ฎ๐ฅ๐ฎ๐ฆ is starting again soon!ERKNet members only - Want to become a ๐„๐ฎ๐ซ๐จ๐ฉ๐ž๐š๐ง ๐’๐ฉ๐ž๐œ๐ข๐š๐ฅ๐ข...
02/09/2026

๐ŸŽ“ The 7th ๐„๐‘๐Š๐๐ž๐ญ ๐๐จ๐ฌ๐ญ๐ ๐ซ๐š๐๐ฎ๐š๐ญ๐ž ๐‚๐ฎ๐ซ๐ซ๐ข๐œ๐ฎ๐ฅ๐ฎ๐ฆ is starting again soon!

ERKNet members only - Want to become a ๐„๐ฎ๐ซ๐จ๐ฉ๐ž๐š๐ง ๐’๐ฉ๐ž๐œ๐ข๐š๐ฅ๐ข๐ฌ๐ญ ๐ข๐ง ๐‘๐š๐ซ๐ž ๐Š๐ข๐๐ง๐ž๐ฒ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ and learn alongside colleagues from across Europe? ๐Ÿฉบ๐ŸŒ

The next three-year programme kicks off in January 2027, consisting of clinical training, webinars and interactive e-learning cases.

๐Ÿ“… ๐€๐ฉ๐ฉ๐ฅ๐ฒ ๐›๐ฒ 31 October 2026
Know someone who might be interested? Tag them or share this post! ๐Ÿ’™

๐Ÿ”— More info & registration: https://tinyurl.com/yctt4ctz

๐Ÿ“ข Dont miss our next ๐–๐ž๐›๐ข๐ง๐š๐ซ tomorrowTopic: ๐“๐ก๐ž ๐„๐ฎ๐ซ๐จ๐ฉ๐ž๐š๐ง ๐๐ข๐ฌ๐ญ๐š๐ฅ ๐ซ๐ž๐ง๐š๐ฅ ๐ญ๐ฎ๐›๐ฎ๐ฅ๐š๐ซ ๐š๐œ๐ข๐๐จ๐ฌ๐ข๐ฌ ๐ซ๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐ฒ: ๐š ๐Ÿ๐ข๐ฏ๐ž ๐ฒ๐ž๐š๐ซ ๐š๐ง๐š๐ฅ๐ฒ๐ฌ๐ข๐ฌ๐Ÿ—“๏ธ ...
31/08/2026

๐Ÿ“ข Dont miss our next ๐–๐ž๐›๐ข๐ง๐š๐ซ tomorrow

Topic: ๐“๐ก๐ž ๐„๐ฎ๐ซ๐จ๐ฉ๐ž๐š๐ง ๐๐ข๐ฌ๐ญ๐š๐ฅ ๐ซ๐ž๐ง๐š๐ฅ ๐ญ๐ฎ๐›๐ฎ๐ฅ๐š๐ซ ๐š๐œ๐ข๐๐จ๐ฌ๐ข๐ฌ ๐ซ๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐ฒ: ๐š ๐Ÿ๐ข๐ฏ๐ž ๐ฒ๐ž๐š๐ซ ๐š๐ง๐š๐ฅ๐ฒ๐ฌ๐ข๐ฌ
๐Ÿ—“๏ธ Date: Tuesday, 01 September
๐Ÿ•“ Time: 4 - 5 PM CET
๐Ÿ—ฃ๏ธ Speaker: Marta Giaccari (Italy)
๐Ÿ’กModerator: Francesco Trepiccione

๐Ÿ‘‰ ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ž๐ซ ๐ง๐จ๐ฐ https://register.gotowebinar.com/register/7918315963383367260

26/08/2026

๐Ÿ“ฆ Something from Heidelberg is heading your wayโ€ฆ ๐Ÿ‘€๐Ÿ’™

Our parcels for ERKNet centres and our latest Curriculum graduates are officially on their way across Europe!

Inside: lots of ERKNet materials, a few useful goodies and, for our graduates, some small surprises. ๐ŸŽ“โœจ
Keep an eye on your mailbox and when your parcel arrives, let us know via the QR code inside!

A little thank you from us for everything you do for ERKNet. We hope you enjoy it ๐Ÿ’™

๐„๐‘๐Š๐๐ž๐ญ ๐Œ๐ž๐ฆ๐›๐ž๐ซ๐ฌ ๐Ž๐ง๐ฅ๐ฒ!We are excited to announce the 2nd call for the ERKNet ๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐…๐ž๐ฅ๐ฅ๐จ๐ฐ๐ฌ๐ก๐ข๐ฉ ๐๐ซ๐จ๐ ๐ซ๐š๐ฆ๐ฆ๐ž and invite juni...
25/08/2026

๐„๐‘๐Š๐๐ž๐ญ ๐Œ๐ž๐ฆ๐›๐ž๐ซ๐ฌ ๐Ž๐ง๐ฅ๐ฒ!

We are excited to announce the 2nd call for the ERKNet ๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐…๐ž๐ฅ๐ฅ๐จ๐ฐ๐ฌ๐ก๐ข๐ฉ ๐๐ซ๐จ๐ ๐ซ๐š๐ฆ๐ฆ๐ž and invite junior clinicians and researchers to apply for one of two selected research projects focusing on rare kidney diseases and ERKReg data ๐Ÿฅ

๐Ÿ’กCheck out the slides or our website for more information
https://www.erknet.org/research/erknet-research-projects/research-fellowship

And apply here!
๐Ÿ”— https://www.surveymonkey.com/r/QRKYZHZ

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 ๐€๐ณ๐ข๐ž๐ง๐๐š ๐Ž๐ฌ๐ฉ๐ž๐๐š๐ฅ๐ข๐ž๐ซ๐š ๐๐ข ๐๐š๐๐จ๐ฏ๐š, Franzi spent a week supporting ERKReg data entry and ex...
19/08/2026

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 ๐€๐ณ๐ข๐ž๐ง๐๐š ๐Ž๐ฌ๐ฉ๐ž๐๐š๐ฅ๐ข๐ž๐ซ๐š ๐๐ข ๐๐š๐๐จ๐ฏ๐š, Franzi spent a week supporting ERKReg data entry and exchanging ideas to improve the registry. Padova... lavorare con voi รจ fantastico. Grazie! ๐Ÿ’š๐Ÿคโ™ฅ๏ธ๐Ÿ“Š

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 ๐€๐’๐’๐“ ๐’๐ฉ๐ž๐๐š๐ฅ๐ข ๐‚๐ข๐ฏ๐ข๐ฅ๐ข ๐๐ซ๐ž๐ฌ๐œ๐ข๐š, Franzi spent two days supporting ERKReg data entry and ex...
06/08/2026

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 ๐€๐’๐’๐“ ๐’๐ฉ๐ž๐๐š๐ฅ๐ข ๐‚๐ข๐ฏ๐ข๐ฅ๐ข ๐๐ซ๐ž๐ฌ๐œ๐ข๐š, Franzi spent two days supporting ERKReg data entry and exchanging ideas to improve the registry. Grazie per tutto ai nostri colleghi di Brescia ๐Ÿ’š๐Ÿคโ™ฅ๏ธ๐Ÿ“Š

๐ŸŒŸMeet Mathias Hรคberle - Web Developer and System Administrator ๐ŸŒŸMathias has been with us for a very long time, working b...
04/08/2026

๐ŸŒŸMeet Mathias Hรคberle - Web Developer and System Administrator ๐ŸŒŸ

Mathias has been with us for a very long time, working behind the scenes for ERKNet and ERDERA. Read up on his interests, next projects and what his co-workers have to say about him ๐Ÿ’ป

๐Ÿ“ฌ The July ๐„๐‘๐Š๐๐ž๐ญ ๐๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ is out now!What's inside?๐Ÿ‘ฉโ€๐Ÿ‘ฉโ€๐Ÿ‘ฆโ€๐Ÿ‘ฆ Info on the upcoming Alport Syndrome Alliance Workshop in ...
30/07/2026

๐Ÿ“ฌ The July ๐„๐‘๐Š๐๐ž๐ญ ๐๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ is out now!

What's inside?

๐Ÿ‘ฉโ€๐Ÿ‘ฉโ€๐Ÿ‘ฆโ€๐Ÿ‘ฆ Info on the upcoming Alport Syndrome Alliance Workshop in Budapest
๐Ÿ“Š New surveys to participate in, such as "Shared decision making in the ๐ฉ๐ซ๐ž๐ง๐š๐ญ๐š๐ฅ ๐๐ข๐š๐ ๐ง๐จ๐ฌ๐ข๐ฌ ๐จ๐Ÿ ๐‚๐€๐Š๐”๐“"
๐Ÿ“– Progress across ERKNet's clinical guideline projects
๐Ÿคฒ Infos on our first ๐˜๐จ๐ฎ๐ญ๐ก ๐๐š๐ง๐ž๐ฅ meeting earlier this month
๐Ÿš€ Exciting updated on EU rare disease initiatives, such as the ERDERA clinical trial call

We won't spoil all the details here โ€” you'll have to read the newsletter yourself to discover what's ahead!

๐’๐ฎ๐›๐ฌ๐œ๐ซ๐ข๐›๐ž ๐ก๐ž๐ซ๐ž: https://www.erknet.org/

We're launching the first episode of our video series dedicated to key topics in the rare disease landscape โ€“ through Q&...
08/07/2026

We're launching the first episode of our video series dedicated to key topics in the rare disease landscape โ€“ through Q&A Series from "Inside the ERNsโ€. ๐ŸŽฌ

This episode focuses on ๐ ๐ž๐ง๐ž๐ญ๐ข๐œ ๐œ๐จ๐ฎ๐ง๐ฌ๐ž๐ฅ๐ข๐ง๐ , a critical component of care that supports individuals and families in understanding the impact of genetics on health. It involves interpreting genetic information, assessing inherited risks, and guiding informed decision-making

๐ŸงฌGenetic counseling is a process where trained professionals help individuals and families understand how genetics may impact their health. It involves interpreting genetic test results, assessing the risk of inherited conditions, and guiding people through complex medical and emotional decisions.

Its importance becomes especially clear in the context of rare diseases where 80% ๐ซ๐š๐ซ๐ž ๐œ๐จ๐ง๐๐ข๐ญ๐ข๐จ๐ง๐ฌ ๐ก๐š๐ฏ๐ž ๐š ๐ ๐ž๐ง๐ž๐ญ๐ข๐œ ๐จ๐ซ๐ข๐ ๐ข๐ง, and patients often face long, uncertain journeys before receiving a diagnosis. Genetic counseling helps bring clarity to that journey, explaining not just what a diagnosis is, but why it occurs and what it means for the future.

๐Ÿ’ป Watch the first episode to discover and hear directly from ERN experts and patientsโ€™ representatives as they share how genetic counseling is helping turn uncertainty into insight and improving patient care
https://youtu.be/eyvnL1jfDmc?si=GRvYQWkCRXLTuH7-

Thank you so much to the speakers:
Jackie Turner, Genetic Counsellor at Mater University Hospital Dublin, Ireland
Hรฉlรจne Dollfus, ERN-EYE Coordinator, Strasburg University Hospital, France
and Susana Carvajal Arjona, ePAG for ERKNet and member and co-founder of the โ€œASOCIACION HIPOFAMโ€, Spain

In this episode of the "Inside the ERNs โ€“ Q&A Series", we explore w...

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