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.

โœจ ๐Ž๐ฎ๐ญ ๐จ๐Ÿ ๐Ž๐Ÿ๐Ÿ๐ข๐œ๐ž: Holiday Break ๐ŸŽ‰After an incredibly busy and eventful year, the ERKNet team is taking a well-deserved br...
22/12/2025

โœจ ๐Ž๐ฎ๐ญ ๐จ๐Ÿ ๐Ž๐Ÿ๐Ÿ๐ข๐œ๐ž: Holiday Break ๐ŸŽ‰

After an incredibly busy and eventful year, the ERKNet team is taking a well-deserved break to rest and recharge. ๐Ÿ›‹๏ธ๐Ÿ’ค Weโ€™ll be out of office from December 23rd to January 7th, getting ready to start the new year with fresh energy and exciting plans! ๐Ÿ’ฅ

Thank you for being part of our journey this yearโ€”wishing you a peaceful and joyful holiday season. See you in 2025! ๐Ÿฅ‚๐Ÿ’™

18/12/2025

โœจ ๐’๐ž๐š๐ฌ๐จ๐งโ€™๐ฌ ๐ ๐ซ๐ž๐ž๐ญ๐ข๐ง๐ ๐ฌ ๐Ÿ๐ซ๐จ๐ฆ ๐ญ๐ก๐ž ๐„๐‘๐Š๐๐ž๐ญ ๐ญ๐ž๐š๐ฆ โœจ

As the year comes to an end, we want to say thank you to our whole ERKNet community โ€” colleagues, partners, patients, representatives, and friends across Europe and beyond ๐Ÿ’™

Whether you say Happy Holidays, Bonnes fรชtes, Frohe Feiertage, Felices fiestas or Buone feste, weโ€™re sending warm wishes to you and your loved ones.

Hereโ€™s to continued collaboration, connection, and shared goals in the year ahead โœจ

ERKsperience is coming soon ๐ŸŽ‰Our new ERKNet case-based webinar series kicks off with:โ€œThe Hyperoxalurias โ€“ genetic, rare...
04/12/2025

ERKsperience is coming soon ๐ŸŽ‰

Our new ERKNet case-based webinar series kicks off with:
โ€œThe Hyperoxalurias โ€“ genetic, rare & acquired formsโ€
Find out more about our new format in the slides โฌ‡๏ธ

๐Ÿ—“ 22 January 2026 | ๐Ÿ•” 17:00โ€“18:00 CET

๐Ÿ”— Register here & send us your hyperoxaluria cases to be featured!
https://tinyurl.com/3knkkyn3

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 last webinar of this year together with ESPN!Topic: ๐ƒ๐ž๐ง๐ญโ€™๐ฌ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž ๐†๐ฎ๐ข๐๐ž๐ฅ๐ข๐ง๐žDa...
03/12/2025

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 last webinar of this year together with ESPN!
Topic: ๐ƒ๐ž๐ง๐ญโ€™๐ฌ ๐ƒ๐ข๐ฌ๐ž๐š๐ฌ๐ž ๐†๐ฎ๐ข๐๐ž๐ฅ๐ข๐ง๐ž
Date: 09 Dezember

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ง๐Ÿ‡ชAt UZ Leuven, Yara spent multiple days supporting ERKReg data entry and exchanging ideas to i...
10/11/2025

๐Ž๐ง ๐ญ๐ก๐ž ๐‘๐จ๐š๐ ๐ฐ๐ข๐ญ๐ก ๐„๐‘๐Š๐‘๐ž๐  ๐Ÿš™๐Ÿ‡ง๐Ÿ‡ช

At UZ Leuven, Yara spent multiple days supporting ERKReg data entry and exchanging ideas to improve the registry. Bedankt voor de geweldige samenwerking ๐Ÿ–ค๐Ÿ’›โ™ฅ๏ธ

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...
28/10/2025

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: DNAJB11.
Swipe for the teaser and check our website for how to get involved.
https://www.erknet.org/research/erknet-research-projects/projects-overview

๐ŸŒโœจ Applications now open for the ๐„๐‘๐Š๐๐ž๐ญ ๐‚๐ฅ๐ข๐ง๐ข๐œ๐š๐ฅ ๐„๐ฑ๐œ๐ก๐š๐ง๐ ๐ž ๐๐ซ๐จ๐ ๐ซ๐š๐ฆ๐ฆ๐ž!A unique opportunity for junior healthcare professio...
22/10/2025

๐ŸŒโœจ Applications now open for the ๐„๐‘๐Š๐๐ž๐ญ ๐‚๐ฅ๐ข๐ง๐ข๐œ๐š๐ฅ ๐„๐ฑ๐œ๐ก๐š๐ง๐ ๐ž ๐๐ซ๐จ๐ ๐ซ๐š๐ฆ๐ฆ๐ž!
A unique opportunity for junior healthcare professionals to gain hands-on experience in rare kidney diseases at ERKNet centres across Europe.

Swipe through for all the details and check out our website for more info:
https://www.erknet.org/education-training/erknet-clinical-exchange-programme

Meet Carol Barahona Ponce - Project Manager ๐ŸŒŸCheck out how Carolโ€™s expertise, competence, and contagious warmth contribu...
15/10/2025

Meet Carol Barahona Ponce - Project Manager ๐ŸŒŸ

Check out how Carolโ€™s expertise, competence, and contagious warmth contribute to our work and energize the ERKNet office every day ๐Ÿ‡จ๐Ÿ‡ฑ

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.

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