ERKNet - European Reference Network for Rare Kidney Diseases
@erknet.bsky.social
210 followers 79 following 70 posts
ERKNet is devoted to improving the lives of patients with rare kidney diseases. https://www.erknet.org
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erknet.bsky.social
𝐅𝐀𝐐: 𝐞𝐏𝐀𝐆 𝐫𝐞𝐩𝐫𝐞𝐬𝐞𝐧𝐭𝐚𝐭𝐢𝐯𝐞𝐬💡
What are ERKNet ePAGs and how are they shaping the future of rare kidney disease patients in Europe?

💬 Do you match the criteria and want to make a difference?
Join the ERKNet ePAGs and get involved!

🔗 https://www.erknet.org/patients/erknet-epags/patient-engagement-rules
erknet.bsky.social
📢 𝐔𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫!

Our Webinar September is coming to an end with our last session!
Topic: 𝐏𝐡𝐨𝐬𝐩𝐡𝐚𝐭𝐞 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬
Date: 30 September
Speaker: Carsten Wagner
Moderator: Jens König

👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: https://register.gotowebinar.com/register/2567953835042611545
erknet.bsky.social
Meet Anna - Project Manager🌟

Our team keep growing... Check out the slides and discover how Anna is contributing to rare kidney disease research within the ERKNet team.
erknet.bsky.social
📚𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 𝐢𝐬 𝐨𝐩𝐞𝐧! ERKNet members only - Join the 3-year ERKNet Postgraduate Curriculum (Jan 15, 2026 – Dec 15, 2028) with webinars, interactive e-learning and clinical training—earn the European Specialist in Rare Kidney Diseases certificate
🗓️Apply by Oct 31, 2025 → https://tinyurl.com/2jxxfx8f
erknet.bsky.social
📝𝐄𝐑𝐊𝐑𝐞𝐠 𝐁𝐚𝐬𝐢𝐜 𝐓𝐫𝐚𝐢𝐧𝐢𝐧𝐠 𝐒𝐞𝐬𝐬𝐢𝐨𝐧

On 𝐌𝐨𝐧𝐝𝐚𝐲, 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 29𝐭𝐡, we have our next ERKReg basic training session📚
The session will be divided into 2 different parts:

40 min - Basic information about ERKReg

20 min - Q&A

🔗𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐫𝐢𝐠𝐡𝐭 𝐡𝐞𝐫𝐞: https://www.erknet.org/databases/erkreg-training-sessions
erknet.bsky.social
𝐎𝐧 𝐭𝐡𝐞 𝐑𝐨𝐚𝐝 𝐰𝐢𝐭𝐡 𝐄𝐑𝐊𝐑𝐞𝐠 🚙🇪🇸

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 cálida bienvenida, equipo de Madrid ♥️💛📊
erknet.bsky.social
🌍 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?
erknet.bsky.social
📢 Upcoming ERKNet Webinar!

📝 Topic: Membranous Nephropathy
🗓️ Date: September 16, 2025
👩‍⚕️ Speaker: Anne-Els van de Logt 

👉 Register now: https://register.gotowebinar.com/register/1699152730290967637
erknet.bsky.social
🌐 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
erknet.bsky.social
Don´t miss the upcoming ReCONNET Webinar!
erknet.bsky.social
📢 Upcoming ReCONNET Webinar!

📝 Topic: Microvascular Involvement in Antiphospholipid Syndrome (APS)
🗓️ Date: September 3, 2025
👩‍⚕️ Speaker: Savino Sciascia (Italy)

👉 Register now: https://us06web.zoom.us/webinar/register/WN_8cel9tnMTC6Blj14Fw9zmg<span class="text-blue-600 dark:text-sky-400">#/registration
erknet.bsky.social
☀️September Webinars☀️

Join us for our Webinar packed September!

From diagnosis and treatment to the latest research developments 🔬 — there’s something for everyone.

No matter your background, our webinars are free and open to all 👥
🔗 https://www.erknet.org/education-training/next-webinars
erknet.bsky.social
On the Road with ERKReg 🚙🇫🇷

At Hôpital 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! 💙📊

#ERKNetOnTheRoad #RareKidneyDiseases #Paris #ERKReg
erknet.bsky.social
🧪 FAQ: ERKNet Patient-Initiated Research
Have a project idea on rare kidney disease? Patient reps & ePAG members can apply. ERKNet supports one meeting (≤6 people) to launch approved projects.
Apply: https://www.erknet.org/patients/research/research-proposals-from-patients

#ERKNet #RareDisease
erknet.bsky.social
🔍 ERKsplain – 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
erknet.bsky.social
Don´t miss our ERKReg Training Session today!
erknet.bsky.social
📝ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again📚.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

🔗Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease
erknet.bsky.social
🌟Meet Sheila, our MSCA PhD Researcher🌟

Dive into her slides and explore the incredible contributions she’s making with the ERKNet team.

#MeetTheTeam #ERKNet #RareKidneyDiseases
erknet.bsky.social
📢 Upcoming ReCONNET Webinar!

📝 Topic: Microvascular Involvement in Antiphospholipid Syndrome (APS)
🗓️ Date: September 3, 2025
👩‍⚕️ Speaker: Savino Sciascia (Italy)

👉 Register now: https://us06web.zoom.us/webinar/register/WN_8cel9tnMTC6Blj14Fw9zmg<span class="text-blue-600 dark:text-sky-400">#/registration
erknet.bsky.social
We’re back from ERKNet’s summer break! ☀️
Join our free expert-led webinars on rare kidney diseases 🔍
From diagnosis to cutting-edge research 🔬 — open to all 👥
More info: https://www.erknet.org/education-training/next-webinars
erknet.bsky.social
Join our ERKReg Basic Training!
erknet.bsky.social
📝ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again📚.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

🔗Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease
erknet.bsky.social
Join our ERKReg Basic Training!
erknet.bsky.social
📝ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again📚.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

🔗Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease
erknet.bsky.social
On the Road with ERKReg 🚙🇫🇷

At Hôpital Femme Mère 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! 💙📊

#ERKNetOnTheRoad #RareKidneyDiseases #Lyon #ERKReg
erknet.bsky.social
New in KI Reports: GDF-15 (serum) & uEGF (urine) independently associate with pediatric CKD progression; combined models perform best—validated in 4C & ESCAPE cohorts. Big collaborative effort by our network.

🔗 https://www.sciencedirect.com/science/article/pii/S2468024925004358?via%3Dihub
Reposted by ERKNet - European Reference Network for Rare Kidney Diseases
erknet.bsky.social
📝ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again📚.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

🔗Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease
erknet.bsky.social
📝ERKReg Basic Training Session

On Monday, August 25th, we host our ERKReg training session again📚.

40 min - Basic information about ERKReg.

20 min - Questions and answers.

🔗Register right here: www.erknet.org/databases/er...

#ERKucation #rarekidneydisease #erknet #training #kidneydisease