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”Ž Orphacodes = ๐ฏ๐ข๐ฌ๐ข๐›๐ข๐ฅ๐ข๐ญ๐ฒ ๐Ÿ๐จ๐ซ ๐ซ๐š๐ซ๐ž ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌTheyโ€™re unique IDs from Orphanet that keep rare (and ultra-rare) conditions f...
01/10/2025

๐Ÿ”Ž Orphacodes = ๐ฏ๐ข๐ฌ๐ข๐›๐ข๐ฅ๐ข๐ญ๐ฒ ๐Ÿ๐จ๐ซ ๐ซ๐š๐ซ๐ž ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ

Theyโ€™re unique IDs from Orphanet that keep rare (and ultra-rare) conditions from being lost under โ€œother.โ€ Better coding = better tracking, research, care, and support.

Want to look up a code? Check out Orphanet for more info!

๐Ÿ’Š ๐„๐œ๐ฎ๐ฅ๐ข๐ณ๐ฎ๐ฆ๐š๐› & ๐š๐‡๐”๐’: whatโ€™s newโ€”and what it means for youIn short, this treatment helps by blocking part of the immune s...
23/09/2025

๐Ÿ’Š ๐„๐œ๐ฎ๐ฅ๐ข๐ณ๐ฎ๐ฆ๐š๐› & ๐š๐‡๐”๐’: whatโ€™s newโ€”and what it means for you

In short, this treatment helps by blocking part of the immune system to protect your blood cells. Since 2023, thereโ€™ve been important updates to how itโ€™s available.
Swipe through for a clear overview.

๐…๐€๐: ๐ž๐๐€๐† ๐ซ๐ž๐ฉ๐ซ๐ž๐ฌ๐ž๐ง๐ญ๐š๐ญ๐ข๐ฏ๐ž๐ฌ๐Ÿ’กWhat are ERKNet ePAGs and how are they actively shaping the future of rare kidney disease pati...
22/09/2025

๐…๐€๐: ๐ž๐๐€๐† ๐ซ๐ž๐ฉ๐ซ๐ž๐ฌ๐ž๐ง๐ญ๐š๐ญ๐ข๐ฏ๐ž๐ฌ๐Ÿ’ก
What are ERKNet ePAGs and how are they actively shaping the future of rare kidney disease patients in Europe?

๐Ÿ’ฌ Do you match the criteria and also want to make a difference?
Join the ERKNet ePAGs and get involved!

๐Ÿ”— https://www.erknet.org/patients/erknet-epags/patient-engagement-rules

Meet Anna - Project Manager๐ŸŒŸOur team keep growing... Check out the slides and discover how Anna is contributing to rare ...
18/09/2025

Meet Anna - Project Manager๐ŸŒŸ

Our team keep growing... Check out the slides and discover how Anna is contributing to rare kidney disease research within the ERKNet team.

๐Ÿ“š ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐š๐ญ๐ข๐จ๐ง ๐ข๐ฌ ๐จ๐ฉ๐ž๐ง! ERKNet members only - Join the 3-year ERKNet Postgraduate Curriculum (Jan 15, 2026 โ€“ Dec 15, 202...
16/09/2025

๐Ÿ“š ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ซ๐š๐ญ๐ข๐จ๐ง ๐ข๐ฌ ๐จ๐ฉ๐ž๐ง! ERKNet members only - Join the 3-year ERKNet Postgraduate Curriculum (Jan 15, 2026 โ€“ Dec 15, 2028) with webinars, interactive e-learning and clinical trainingโ€”earn the European Specialist in Rare Kidney Diseases certificate.
๐Ÿ—“๏ธ Apply by Oct 31, 2025 โ†’ https://docs.google.com/forms/d/e/1FAIpQLSePGl4test6RvjA151VtVZTUC7SPtUDwUj7fMCgFA8AqH8Agw/viewform

๐Ÿ“๐„๐‘๐Š๐‘๐ž๐  ๐๐š๐ฌ๐ข๐œ ๐“๐ซ๐š๐ข๐ง๐ข๐ง๐  ๐’๐ž๐ฌ๐ฌ๐ข๐จ๐งOn ๐Œ๐จ๐ง๐๐š๐ฒ, ๐’๐ž๐ฉ๐ญ๐ž๐ฆ๐›๐ž๐ซ 29๐ญ๐ก, we have our next ERKReg basic training session๐Ÿ“šThe session will...
12/09/2025

๐Ÿ“๐„๐‘๐Š๐‘๐ž๐  ๐๐š๐ฌ๐ข๐œ ๐“๐ซ๐š๐ข๐ง๐ข๐ง๐  ๐’๐ž๐ฌ๐ฌ๐ข๐จ๐ง

On ๐Œ๐จ๐ง๐๐š๐ฒ, ๐’๐ž๐ฉ๐ญ๐ž๐ฆ๐›๐ž๐ซ 29๐ญ๐ก, we have our next ERKReg basic training session๐Ÿ“š
The session will be divided into 2 different parts:

40 min - Basic information about ERKReg

20 min - Q&A

๐Ÿ”—๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ž๐ซ ๐ซ๐ข๐ ๐ก๐ญ ๐ก๐ž๐ซ๐ž: https://www.erknet.org/databases/erkreg-training-sessions

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ช๐Ÿ‡ธAt Hospital Universitario 12 de Octubre in Madrid, Jose spent three weeks supporting ERKReg d...
11/09/2025

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ช๐Ÿ‡ธ

At Hospital Universitario 12 de Octubre in Madrid, Jose spent three weeks supporting ERKReg data entry and exchanging ideas to improve the registry. Gracias por la cรกlida bienvenida, equipo de Madrid โ™ฅ๏ธ๐Ÿ’›๐Ÿ“Š

๐ŸŒ Multi-stakeholder workshop: ๐๐ซ๐ข๐จ๐ซ๐ข๐ญ๐ข๐ณ๐ข๐ง๐  ๐ซ๐š๐ซ๐ž ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿ๐จ๐ซ ๐š๐๐ฏ๐š๐ง๐œ๐ž๐ ๐ญ๐ก๐ž๐ซ๐š๐ฉ๐ข๐ž๐ฌ (ATMPs)Day 2 today! Led by ERDERA, this ...
10/09/2025

๐ŸŒ Multi-stakeholder workshop: ๐๐ซ๐ข๐จ๐ซ๐ข๐ญ๐ข๐ณ๐ข๐ง๐  ๐ซ๐š๐ซ๐ž ๐๐ข๐ฌ๐ž๐š๐ฌ๐ž๐ฌ ๐Ÿ๐จ๐ซ ๐š๐๐ฏ๐š๐ง๐œ๐ž๐ ๐ญ๐ก๐ž๐ซ๐š๐ฉ๐ข๐ž๐ฌ (ATMPs)

Day 2 today! Led by ERDERA, this workshop brings together researchers, clinicians, patient advocates, industry and policymakers from across Europe to tackle a big question: how can we better prioritize rare diseases for advanced therapies?

Whatโ€™s happening:
โ€ข Finalising a practical, inclusive prioritisation framework
โ€ข Creating a guide to match disease categories with the right ATMP platforms

How itโ€™s tested:
โ€ข Day 1: co-create & refine with all stakeholders
โ€ข Day 2: apply in practice and build a simple decision tree mapping diseases to technologies

Why it matters: This work feeds a Rare Disease Prioritisation Tool for ATMP Developmentโ€”aiming for more targeted, impactful and equitable future treatments.
Thank you to everyone involvedโ€”and to all who contributed to the earlier review, interviews and survey! ๐Ÿ’™

โ˜€๏ธSeptember Webinarsโ˜€๏ธJoin us for our Webinar packed September! From diagnosis and treatment to the latest research deve...
29/08/2025

โ˜€๏ธSeptember Webinarsโ˜€๏ธ

Join us for our Webinar packed September!

From diagnosis and treatment to the latest research developments ๐Ÿ”ฌ โ€” thereโ€™s something for everyone.

Whether youโ€™re a medical student, health professional, patient, researcher, or simply curious about kidney health, our webinars are free and open to all ๐Ÿ‘ฅ

โ—Check them our here: https://www.erknet.org/education-training/next-webinars

On the Road with ERKReg ๐Ÿš™๐Ÿ‡ซ๐Ÿ‡ทAt Hรดpital Femme Mรจre Enfant in Lyon, Yara spent a week supporting ERKReg data entry and exch...
14/08/2025

On the Road with ERKReg ๐Ÿš™๐Ÿ‡ซ๐Ÿ‡ท

At Hรดpital Femme Mรจre Enfant in Lyon, Yara spent a week supporting ERKReg data entry and exchanging ideas to improve the registry. Merci to the Lyon team for the warm welcome, great teamwork, and valuable insights! ๐Ÿ’™๐Ÿ“Š

๐Ÿ“ฐ ๐๐ž๐ฐ ๐ฉ๐š๐ฉ๐ž๐ซ ๐š๐ฅ๐ž๐ซ๐ญ!Researchers from the ESCAPE network show that GDF-15 (blood) and uEGF (urine) each link to CKD progres...
12/08/2025

๐Ÿ“ฐ ๐๐ž๐ฐ ๐ฉ๐š๐ฉ๐ž๐ซ ๐š๐ฅ๐ž๐ซ๐ญ!

Researchers from the ESCAPE network show that GDF-15 (blood) and uEGF (urine) each link to CKD progression in kidsโ€”and work even better together. A promising step toward smarter, more personalized care. (Open accessโ€”check our bio/stories.)

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™Weโ€™re kicking off a new format where we visit ERKReg centres across Europe to support data entr...
24/07/2025

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

Weโ€™re kicking off a new format where we visit ERKReg centres across Europe to support data entry and exchange ideas ๐Ÿค
Swipe through to see how the first visit went!

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