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‡ช๐Ÿ‡ช PICKED in Tallinn!The PICKED community is getting together in Tallinn to share research, exchange ideas and look at h...
17/09/2026

๐Ÿ‡ช๐Ÿ‡ช 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. ๐Ÿงฌ๐Ÿ’ก

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 ๐Ÿ”ฌ

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

๐Ÿ”— Fond more info here: https://www.projectpicked.eu

Wishing everyone a great final day!

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/

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