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.

02/06/2026

๐Ÿ’™A Recap of our ๐„๐‘๐Š๐๐ž๐ญ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐Œ๐ž๐ž๐ญ๐ข๐ง๐  in Lyon ๐Ÿ‡ซ๐Ÿ‡ท

From inspiring sessions and engaging discussions to shared meals, team moments, and our now traditional journey together, which includes arriving a day early in a mini bus and spending the evening together, this reel captures a little of what makes our Annual Meeting so special.

Every year, we see that ERKNet is more than a network. It is a community built on collaboration, shared goals, and the people behind the work. The familiar atmosphere, the valuable input from colleagues across Europe, and the conversations that continue long after the sessions end are what make these meetings so imperative.

Many ideas, projects, and collaborations start here and we are excited to see where they will lead next.
Thank you to everyone who made Lyon such a success. We already canโ€™t wait to welcome you next year to our home base in Heidelberg and show you what we have in store ๐Ÿ’™

๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐จ๐ฉ๐ญ๐ข๐จ๐ง๐ฌ ๐š๐ซ๐ž ๐ฅ๐ข๐ฏ๐ž ๐Ÿ”Žbeyond our funded fellowships, weโ€™re sharing extra self-funded projects you can still join. T...
01/06/2026

๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐จ๐ฉ๐ญ๐ข๐จ๐ง๐ฌ ๐š๐ซ๐ž ๐ฅ๐ข๐ฏ๐ž ๐Ÿ”Ž

beyond our funded fellowships, weโ€™re sharing extra self-funded projects you can still join. Todayโ€™s spotlight: ๐…๐ฎ๐ฅ๐ฅ ๐‡๐จ๐ฎ๐ฌ๐ž ๐๐ž๐ฉ๐ก๐ซ๐จ๐ฉ๐š๐ญ๐ก๐ฒ.

Swipe for the teaser and check our website for how to get involved.
๐Ÿ”—https://tinyurl.com/49cvsr87

๐Ÿ“ฌ Our latest ERKNet Newsletter is out now!What's inside?๐Ÿ–ฅ๏ธ Registry updates, such as the new ๐€๐๐‚๐€ ๐•๐š๐ฌ๐œ๐ฎ๐ฅ๐ข๐ญ๐ข๐ฌ ๐’๐ฎ๐›๐ซ๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐ฒ...
29/05/2026

๐Ÿ“ฌ Our latest ERKNet Newsletter is out now!

What's inside?

๐Ÿ–ฅ๏ธ Registry updates, such as the new ๐€๐๐‚๐€ ๐•๐š๐ฌ๐œ๐ฎ๐ฅ๐ข๐ญ๐ข๐ฌ ๐’๐ฎ๐›๐ซ๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐ฒ
๐ŸŒ Developments from across the network, including the new ๐‚๐€๐Œ๐’ ๐ซ๐ž๐ฉ๐จ๐ซ๐ญ
๐Ÿค Our open call to become an ๐€๐Ÿ๐Ÿ๐ข๐ฅ๐ข๐š๐ญ๐ž๐ ๐๐š๐ซ๐ญ๐ง๐ž๐ซ within the ERNs
๐Ÿ“š Educational updates and upcoming learning opportunities like the ๐ซ๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐ž๐ฑ๐œ๐ก๐š๐ง๐ ๐ž ๐Ÿ๐ž๐ฅ๐ฅ๐จ๐ฐ๐ฌ๐ก๐ข๐ฉ ๐ฉ๐ซ๐จ๐ ๐ซ๐š๐ฆ
๐Ÿš€ Exciting events that are coming up this year

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/

The 2026 ๐ˆ๐ง๐ญ๐ž๐ซ๐ง๐š๐ญ๐ข๐จ๐ง๐š๐ฅ ๐–๐จ๐ซ๐ค๐ฌ๐ก๐จ๐ฉ ๐จ๐ง ๐€๐ฅ๐ฉ๐จ๐ซ๐ญ ๐’๐ฒ๐ง๐๐ซ๐จ๐ฆ๐ž is coming to Budapest from 5 to 7 September 2026 ๐Ÿ‡ญ๐Ÿ‡บ It is organised b...
27/05/2026

The 2026 ๐ˆ๐ง๐ญ๐ž๐ซ๐ง๐š๐ญ๐ข๐จ๐ง๐š๐ฅ ๐–๐จ๐ซ๐ค๐ฌ๐ก๐จ๐ฉ ๐จ๐ง ๐€๐ฅ๐ฉ๐จ๐ซ๐ญ ๐’๐ฒ๐ง๐๐ซ๐จ๐ฆ๐ž is coming to Budapest from 5 to 7 September 2026 ๐Ÿ‡ญ๐Ÿ‡บ

It is organised by:
- Alport UK
- ERKNet
- Semmelweis University
- Alport Syndrome Alliance

This global event brings together patients, clinicians, researchers, pharmaceutical representatives and more. It is a space to share knowledge, learn from each other, and ๐ฌ๐ก๐š๐ฉ๐ž ๐ญ๐ก๐ž ๐Ÿ๐ฎ๐ญ๐ฎ๐ซ๐ž ๐จ๐Ÿ ๐€๐ฅ๐ฉ๐จ๐ซ๐ญ ๐ซ๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐š๐ง๐ ๐œ๐จ๐ฆ๐ฆ๐ฎ๐ง๐ข๐ญ๐ฒ ๐Ÿคฒ

We will explore the latest research across kidney health, hearing, vision and genetics. You will hear about clinical trials, new treatments, and the importance of early diagnosis.

The workshop also creates space for collaboration. Through discussions and sessions, participants will look at new ideas, challenges and opportunities for the future โ™ฅ๏ธ

Most importantly, patient voices are at the centre. People from around the world will share their experiences and perspectives.

๐Ÿ”— ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐š๐ญ๐ข๐จ๐ง ๐ข๐ฌ ๐จ๐ฉ๐ž๐ง: www.alportsyndromealliance.org
If you are interested in taking part and have questions, please send an email to: [email protected]

We look forward to seeing you in Budapest! ๐Ÿ‡ญ๐Ÿ‡บ

๐„๐‘๐Š๐๐ž๐ญ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐Œ๐ž๐ž๐ญ๐ข๐ง๐  2026 ๐Ÿ‡ซ๐Ÿ‡ท Our 10th Annual Meeting concluded one week ago today. We're still letting everything sink ...
13/05/2026

๐„๐‘๐Š๐๐ž๐ญ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐Œ๐ž๐ž๐ญ๐ข๐ง๐  2026 ๐Ÿ‡ซ๐Ÿ‡ท

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 ๐Ÿ’™

๐ƒ๐š๐ฒ 2 ๐จ๐Ÿ ๐จ๐ฎ๐ซ ๐„๐‘๐Š๐๐ž๐ญ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐Œ๐ž๐ž๐ญ๐ข๐ง๐  in Lyon ๐Ÿ‡ซ๐Ÿ‡ท The momentum continues!We started the day with our Network Board meeting, ...
05/05/2026

๐ƒ๐š๐ฒ 2 ๐จ๐Ÿ ๐จ๐ฎ๐ซ ๐„๐‘๐Š๐๐ž๐ญ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐Œ๐ž๐ž๐ญ๐ข๐ง๐  in Lyon ๐Ÿ‡ซ๐Ÿ‡ท

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 ๐Ÿ“Š

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 weโ€™re looking forward to the second half of the day, which is already well underway ๐Ÿ‘

Thank you again to the team in Lyon and all of our speakers so far!

10th ๐„๐‘๐Š๐๐ž๐ญ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐Œ๐ž๐ž๐ญ๐ข๐ง๐  - Day 1 in Lyon ๐Ÿ‡ซ๐Ÿ‡ท We started off with our ERKReg Board and ExCom meetings, followed by a war...
04/05/2026

10th ๐„๐‘๐Š๐๐ž๐ญ ๐€๐ง๐ง๐ฎ๐š๐ฅ ๐Œ๐ž๐ž๐ญ๐ข๐ง๐  - Day 1 in Lyon ๐Ÿ‡ซ๐Ÿ‡ท

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 โ˜€๏ธ
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)

Itโ€™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 ๐Ÿ’™

A big thank you to the team in Lyon for hosting us. Looking forward to what the next two days will bring!

Annual Meeting WG Session III - ๐“๐ฎ๐›๐ฎ๐ฅ๐จ๐ฉ๐š๐ญ๐ก๐ข๐ž๐ฌAs every year, we take the opportunity to hold our working group sessions o...
01/05/2026

Annual Meeting WG Session III - ๐“๐ฎ๐›๐ฎ๐ฅ๐จ๐ฉ๐š๐ญ๐ก๐ข๐ž๐ฌ

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 ๐๐ข๐ฌ๐œ๐ฎ๐ฌ๐ฌ ๐ฆ๐š๐ญ๐ญ๐ž๐ซ๐ฌ ๐ข๐ง ๐ฉ๐ž๐ซ๐ฌ๐จ๐ง ๐Ÿ‘ฅ

Our third and final WG session will take place on Wednesday, May 6th from 08:00 - 10:00 CET, which includes the ๐“๐ฎ๐›๐ฎ๐ฅ๐จ๐ฉ๐š๐ญ๐ก๐ข๐ž๐ฌ WG

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

๐Ÿ”— Check out more info here: https://lnkd.in/d-SajMjc

Annual Meeting - ๐๐ž๐ฌ๐ญ ๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐€๐›๐ฌ๐ญ๐ซ๐š๐œ๐ญ ๐’๐ž๐ฌ๐ฌ๐ข๐จ๐งAfter numerous submissions, we are also very excited to announce our best...
30/04/2026

Annual Meeting - ๐๐ž๐ฌ๐ญ ๐‘๐ž๐ฌ๐ž๐š๐ซ๐œ๐ก ๐€๐›๐ฌ๐ญ๐ซ๐š๐œ๐ญ ๐’๐ž๐ฌ๐ฌ๐ข๐จ๐ง

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 ๐Ÿ“

We're looking forward to welcoming everyone on site:
๐Ÿ”น Anahita Noruzi - Effects of Sodium Loading and Amiloride on Vascular Stiffness in ADPKD: A Randomized Trial
๐Ÿ”น Elena Levtchenko - Ketogenic Diet Improves Proximal Tubular Dysfunction in Cystinosis: Patient One Study
๐Ÿ”น Adria Tinoco - Preimplantation Genetic Testing: Clinical Outcomes and Liver Disease Assessment in Women with ADPKD
๐Ÿ”น Louis Lebreton - Diagnostic Yield and Clinical Impact of Whole Genome Sequencing in Rare Kidney Diseases: Experience from the French Genomic Medicine Plan (Auragen Laboratory)
๐Ÿ”น Idris Boudhabhay - Renal and Systemic Natural History of Patients with Genetically Confirmed CGS
๐Ÿ”น Bertrand Knebelmann - Renal Trajectories in the French RaDiCo Alport Syndrome Cohort
๐Ÿ”น Shohdan Osman - Impact of Intracranial Aneurysm Screening on Subarachnoid Hemorrhage in Autosomal Dominant Polycystic Kidney Disease ICICA-ADPKD
๐Ÿ”นEloรฏse Colliou - ARPKD with Late Onset in Adulthood: Hepatorenal Phenotype, Genotype- Phenotype Correlation and Long Term Outcome
๐Ÿ”น Theresa Buhmann - Genotype-Phenotype Correlations in GANAB-Associated Autosomal Dominant Polycystic Kidney and Liver Disease

You can also ๐Ÿ๐จ๐ฅ๐ฅ๐จ๐ฐ ๐š๐ฅ๐จ๐ง๐  ๐ฏ๐ข๐ซ๐ญ๐ฎ๐š๐ฅ๐ฅ๐ฒ during our Annual Meeting! Register here:
๐Ÿ”— https://lnkd.in/es6mpUKz

Annual Meeting Session VI - ๐‚๐ฅ๐ข๐ง๐ข๐œ๐š๐ฅ ๐“๐ซ๐ข๐š๐ฅ ๐‘๐ž๐š๐๐ข๐ง๐ž๐ฌ๐ฌ ๐ข๐ง ๐๐ž๐ฉ๐ก๐ซ๐จ๐ฅ๐จ๐ ๐ฒWe wrap up our Annual Meeting with the last plenary se...
29/04/2026

Annual Meeting Session VI - ๐‚๐ฅ๐ข๐ง๐ข๐œ๐š๐ฅ ๐“๐ซ๐ข๐š๐ฅ ๐‘๐ž๐š๐๐ข๐ง๐ž๐ฌ๐ฌ ๐ข๐ง ๐๐ž๐ฉ๐ก๐ซ๐จ๐ฅ๐จ๐ ๐ฒ

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 miss๐Ÿ’ก

๐Š๐ž๐ฒ ๐ญ๐จ๐ฉ๐ข๐œ๐ฌ include
๐Ÿ”น Improving patient recruitment strategies (Anna Kefala)
๐Ÿ”น Facilitating cross-border patient referral for trials (Carolina de la Fuente)
๐Ÿ”น And funding opportunities for therapeutic research through ERDERA (Florence G.)
๐Ÿ”น We will also explore the role of specialised trial networks (Ana Crespo)
๐Ÿ”น And gain an overview of the current and future clinical trial landscape in rare kidney diseases (Gema Ariceta)

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://lnkd.in/es6mpUKz

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