ERKNet - European Reference Network for Rare Kidney Diseases
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases
@erknet.bsky.social
210 followers 79 following 74 posts
ERKNet is devoted to improving the lives of patients with rare kidney diseases. https://www.erknet.org
www.erknet.org
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท 10h
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
erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท 6d
๐ŸŒโœจ Applications now open for the ERKNet Clinical Exchange Programme!
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 apply today!
erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท 13d
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
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท 18d
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 Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico in Milan, Franziska spent five days supporting ERKReg data entry and exchanging ideas to improve the registry.
Teamwork, hands-on support, and fresh ideas to make ERKReg even better.
See how the visit went! ๐Ÿ‘‰
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท 28d
๐ŸŒŸReady for the next "๐„๐‘๐Š๐๐ž๐ญ ๐‚๐จ๐ง๐ง๐ž๐œ๐ญ: ๐๐ž๐ฐ๐ฌ ๐š๐ง๐ ๐ˆ๐ง๐ง๐จ๐ฏ๐š๐ญ๐ข๐จ๐ง๐ฌ" Webinar?๐ŸŒŸ

Join us for updates, insights and developments within the ERKNet community.

๐Ÿ“… Date: October 28, 2025
โฐ Time: 4:00 PM CET
๐Ÿ“ Location: Online
๐Ÿ‘‰ ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ž๐ซ ๐ก๐ž๐ซ๐ž:
Welcome! You are invited to join a meeting: ๐„๐‘๐Š๐๐ž๐ญ ๐‚๐จ๐ง๐ง๐ž๐œ๐ญ: ๐๐ž๐ฐ๐ฌ ๐š๐ง๐ ๐ˆ๐ง๐ง๐จ๐ฏ๐š๐ญ๐ข๐จ๐ง๐ฌ. After registering, you will receive a confirmation email about joining the meeting.
Welcome! You are invited to join a meeting: ๐„๐‘๐Š๐๐ž๐ญ ๐‚๐จ๐ง๐ง๐ž๐œ๐ญ: ๐๐ž๐ฐ๐ฌ ๐š๐ง๐ ๐ˆ๐ง๐ง๐จ๐ฏ๐š๐ญ๐ข๐จ๐ง๐ฌ. After registering, you will receive a confirmation email about joining the meeting.
us02web.zoom.us
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 22
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 shaping the future of rare kidney disease patients in Europe?

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

๐Ÿ”— https://www.erknet.org/patients/erknet-epags/patient-engagement-rules
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 19
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!

Our Webinar September is coming to an end with our last session!
Topic: ๐๐ก๐จ๐ฌ๐ฉ๐ก๐š๐ญ๐ž ๐ƒ๐ข๐ฌ๐จ๐ซ๐๐ž๐ซ๐ฌ
Date: 30 September
Speaker: Carsten Wagner
Moderator: Jens Kรถnig

๐Ÿ‘‰ ๐‘๐ž๐ ๐ข๐ฌ๐ญ๐ž๐ซ ๐ง๐จ๐ฐ: https://register.gotowebinar.com/register/2567953835042611545
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 18
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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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 16
๐Ÿ“š๐‘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://tinyurl.com/2jxxfx8f
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 12
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
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 11
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
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 10
๐ŸŒ Multi-stakeholder workshop: Prioritizing rare diseases for advanced therapies (ATMPs)

Day 2 today! Led by ERDERA, this workshop brings together stakeholders from across Europe to tackle a big question: how can we better prioritize rare diseases for advanced therapies?
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 9
๐Ÿ“ข Upcoming ERKNet Webinar!

๐Ÿ“ Topic: Membranous Nephropathy
๐Ÿ—“๏ธ Date: September 16, 2025
๐Ÿ‘ฉโ€โš•๏ธ Speaker: Anne-Els van de Logtย 

๐Ÿ‘‰ Register now: https://register.gotowebinar.com/register/1699152730290967637
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 2
๐ŸŒ N is for Network Structure!
ERKNet links 70+ expert centers, clinicians, researchers & patients across Europe. Together we build guidelines, drive research & share expertise to improve care in rare kidney diseases.

#ABCforRare #ERKNet #KidneyHealth
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Sep 1
Donยดt miss the upcoming ReCONNET Webinar!
erknet.bsky.social ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 21
๐Ÿ“ข Upcoming ReCONNET Webinar!

๐Ÿ“ Topic: Microvascular Involvement in Antiphospholipid Syndrome (APS)
๐Ÿ—“๏ธ Date: September 3, 2025
๐Ÿ‘ฉโ€โš•๏ธ Speaker: Savino Sciascia (Italy)

๐Ÿ‘‰ Register now: https://us06web.zoom.us/webinar/register/WN_8cel9tnMTC6Blj14Fw9zmg<a href="/hashtag/%2Fregistration" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#/registration
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 29
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.

No matter your background, our webinars are free and open to all ๐Ÿ‘ฅ
๐Ÿ”— https://www.erknet.org/education-training/next-webinars
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 28
On the Road with ERKReg ๐Ÿš™๐Ÿ‡ซ๐Ÿ‡ท

At Hรดpital Necker in Paris, Yara spent two weeks supporting ERKReg data entry and exchanging ideas to improve the registry. Merci to the Paris team for the warm welcome, great teamwork, and valuable insights! ๐Ÿ’™๐Ÿ“Š

#ERKNetOnTheRoad #RareKidneyDiseases #Paris #ERKReg
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 27
๐Ÿงช FAQ: ERKNet Patient-Initiated Research
Have a project idea on rare kidney disease? Patient reps & ePAG members can apply. ERKNet supports one meeting (โ‰ค6 people) to launch approved projects.
Apply: https://www.erknet.org/patients/research/research-proposals-from-patients

#ERKNet #RareDisease
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 26
๐Ÿ” ERKsplain โ€“ Kidney Structure Changes (Part II)

Quick look back: structural kidney differences can be present from birth or appear later. Some are harmless, others may affect function and need care. In this part, we cover more types.

Save & share for awareness!

#KidneyHealth #ERKsplain
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 25
Donยดt miss our ERKReg Training Session today!
erknet.bsky.social ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 6
๐Ÿ“ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again๐Ÿ“š.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

๐Ÿ”—Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 22
๐ŸŒŸMeet Sheila, our MSCA PhD Researcher๐ŸŒŸ

Dive into her slides and explore the incredible contributions sheโ€™s making with the ERKNet team.

#MeetTheTeam #ERKNet #RareKidneyDiseases
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 21
๐Ÿ“ข Upcoming ReCONNET Webinar!

๐Ÿ“ Topic: Microvascular Involvement in Antiphospholipid Syndrome (APS)
๐Ÿ—“๏ธ Date: September 3, 2025
๐Ÿ‘ฉโ€โš•๏ธ Speaker: Savino Sciascia (Italy)

๐Ÿ‘‰ Register now: https://us06web.zoom.us/webinar/register/WN_8cel9tnMTC6Blj14Fw9zmg<a href="/hashtag/%2Fregistration" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#/registration
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 18
Weโ€™re back from ERKNetโ€™s summer break! โ˜€๏ธ
Join our free expert-led webinars on rare kidney diseases ๐Ÿ”
From diagnosis to cutting-edge research ๐Ÿ”ฌ โ€” open to all ๐Ÿ‘ฅ
More info: https://www.erknet.org/education-training/next-webinars
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 18
Join our ERKReg Basic Training!
erknet.bsky.social ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 6
๐Ÿ“ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again๐Ÿ“š.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

๐Ÿ”—Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease
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erknet.bsky.social
ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 15
Join our ERKReg Basic Training!
erknet.bsky.social ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social ยท Aug 6
๐Ÿ“ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again๐Ÿ“š.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

๐Ÿ”—Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease
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