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.
Our team keep growing... Check out the slides and discover how Anna is contributing to rare kidney disease research within the ERKNet team.
September 18, 2025 at 4:03 PM
Everybody can reply
2 likes
📢 Learn more about ERKReg Training Sessions! 🩺📊
Join our training sessions to master data entry, best practices & registry updates. Open to ERKNet members & nephrology professionals worldwide!
🔗 Sign up now: www.erknet.org/databases/er...
#ERKReg #Nephrology #MedicalTraining #ERKNet #StayInformed
Join our training sessions to master data entry, best practices & registry updates. Open to ERKNet members & nephrology professionals worldwide!
🔗 Sign up now: www.erknet.org/databases/er...
#ERKReg #Nephrology #MedicalTraining #ERKNet #StayInformed
March 18, 2025 at 11:12 AM
Everybody can reply
2 likes
🌐 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 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
September 2, 2025 at 3:02 PM
Everybody can reply
1 likes
🌍✨ Live from the #ERKNet Annual Meeting
🎉 The event kicked off this morning in Leuven, Belgium!
🧑🔬👥 Our President, @flaviagalletti.bsky.social will be attending until Wednesday, May 21st, alongside scientists from across Europe and patient representatives.
@erknet.bsky.social #PKDInternational
🎉 The event kicked off this morning in Leuven, Belgium!
🧑🔬👥 Our President, @flaviagalletti.bsky.social will be attending until Wednesday, May 21st, alongside scientists from across Europe and patient representatives.
@erknet.bsky.social #PKDInternational
May 19, 2025 at 2:52 PM
Everybody can reply
1 reposts
3 likes
🌟Meet Ariel, our Biostatistician🌟
Dive into her slides and explore the incredible contributions she’s making with the ERKNet team.
#MeetTheTeam #ERKNet #RareKidneyDiseases
Dive into her slides and explore the incredible contributions she’s making with the ERKNet team.
#MeetTheTeam #ERKNet #RareKidneyDiseases
July 18, 2025 at 11:23 AM
Everybody can reply
1 likes
📱 M is for Mobile App for Patients!
The NELIA App helps people with rare kidney diseases manage symptoms, track data & support research — all from their phones.
🔗 Learn more: nelia-rgd.com/uk
Download available for Android and Apple.
#ERKNet #NeliaApp #DigitalHealth #RareKidneyDiseases #ABCforRare
The NELIA App helps people with rare kidney diseases manage symptoms, track data & support research — all from their phones.
🔗 Learn more: nelia-rgd.com/uk
Download available for Android and Apple.
#ERKNet #NeliaApp #DigitalHealth #RareKidneyDiseases #ABCforRare
July 31, 2025 at 10:07 AM
Everybody can reply
2 likes
1 saves
📍 ERKNet is present at the ERA Congress 2025 in Vienna!
Come find us at booth X1.255 and learn more about our ERKNet network, the ERKReg registry, and the exciting projects we're working on.
We’d love to meet you! 💬👋 #ERA2025 #ERKNet #RareKidneyDiseases #ERKReg #Networking #Vienna
Come find us at booth X1.255 and learn more about our ERKNet network, the ERKReg registry, and the exciting projects we're working on.
We’d love to meet you! 💬👋 #ERA2025 #ERKNet #RareKidneyDiseases #ERKReg #Networking #Vienna
June 5, 2025 at 2:36 PM
Everybody can reply
4 likes
Upcoming ERKNet Webinar! 📢
📝Topic: Anti-Factor H Auto-Antibodies
🗓️ Date: June 24, 2025
⏰ Time: 4:00–5:00 PM CET
👩⚕️ Speaker: Michal Malina
👉 Register now: register.gotowebinar.com/register/711...
🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!
📝Topic: Anti-Factor H Auto-Antibodies
🗓️ Date: June 24, 2025
⏰ Time: 4:00–5:00 PM CET
👩⚕️ Speaker: Michal Malina
👉 Register now: register.gotowebinar.com/register/711...
🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!
June 12, 2025 at 11:11 AM
Everybody can reply
3 reposts
4 likes
🌟Ready for the next "𝐄𝐑𝐊𝐍𝐞𝐭 𝐂𝐨𝐧𝐧𝐞𝐜𝐭: 𝐍𝐞𝐰𝐬 𝐚𝐧𝐝 𝐈𝐧𝐧𝐨𝐯𝐚𝐭𝐢𝐨𝐧𝐬" Webinar?🌟
Join us for updates, insights and developments within the ERKNet community.
📅 Date: October 28, 2025
⏰ Time: 4:00 PM CET
📍 Location: Online
👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞:
Join us for updates, insights and developments within the ERKNet community.
📅 Date: October 28, 2025
⏰ Time: 4:00 PM CET
📍 Location: Online
👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞:
Welcome! You are invited to join a meeting: 𝐄𝐑𝐊𝐍𝐞𝐭 𝐂𝐨𝐧𝐧𝐞𝐜𝐭: 𝐍𝐞𝐰𝐬 𝐚𝐧𝐝 𝐈𝐧𝐧𝐨𝐯𝐚𝐭𝐢𝐨𝐧𝐬. After registering, you will receive a confirmation email about joining the meeting.
Welcome! You are invited to join a meeting: 𝐄𝐑𝐊𝐍𝐞𝐭 𝐂𝐨𝐧𝐧𝐞𝐜𝐭: 𝐍𝐞𝐰𝐬 𝐚𝐧𝐝 𝐈𝐧𝐧𝐨𝐯𝐚𝐭𝐢𝐨𝐧𝐬. After registering, you will receive a confirmation email about joining the meeting.
us02web.zoom.us
September 30, 2025 at 10:03 AM
Everybody can reply
2 likes
📝ERKReg Basic Training Session
On Thursday, July 31st, 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
On Thursday, July 31st, 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
July 14, 2025 at 12:22 PM
Everybody can reply
1 reposts
1 quotes
3 likes
🌍✨ 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!
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!
October 22, 2025 at 4:03 PM
Everybody can reply
At #EAU25, Giovanni Mosiello shared insights on SBoD & ARM, MDT benefits, & ERN eUROGEN’s role in new guidelines:
💙 Guidelines on SBoD (with EAU, ESPU, ERN ITHACA, ERN ERKNet & IFSBH
💙 Validation of Orphanet classification for all SBoD
💙 Guidelines on ARM
#PedUro #RareDisease #UroSoMe
💙 Guidelines on SBoD (with EAU, ESPU, ERN ITHACA, ERN ERKNet & IFSBH
💙 Validation of Orphanet classification for all SBoD
💙 Guidelines on ARM
#PedUro #RareDisease #UroSoMe
March 26, 2025 at 9:00 AM
Everybody can reply
2 likes
📢 Upcoming ERKNet Webinar!
📝 Topic: Membranous Nephropathy
🗓️ Date: September 16, 2025
👩⚕️ Speaker: Anne-Els van de Logt
👉 Register now: https://register.gotowebinar.com/register/1699152730290967637
📝 Topic: Membranous Nephropathy
🗓️ Date: September 16, 2025
👩⚕️ Speaker: Anne-Els van de Logt
👉 Register now: https://register.gotowebinar.com/register/1699152730290967637
September 9, 2025 at 9:02 AM
Everybody can reply
1 likes
📢 ERKNet Clinical Exchange Programme – Apply Now! (Members only)
Gain hands-on experience and expand your knowledge in rare kidney diseases.
🔗 Learn more: www.erknet.org/education-tr...
📝 Find our Application Survey here: www.surveymonkey.com/r/B2CCJP5
#ERKNet #ClinicalExchange
Gain hands-on experience and expand your knowledge in rare kidney diseases.
🔗 Learn more: www.erknet.org/education-tr...
📝 Find our Application Survey here: www.surveymonkey.com/r/B2CCJP5
#ERKNet #ClinicalExchange
March 7, 2025 at 11:34 AM
Everybody can reply
2 reposts
2 quotes
1 likes
Clinical Practice Recommendations on Kidney Management in Methylmalonic Acidemia: an Expert Consensus Statement From ERKNet and MetabERN scientiasalut.gencat.cat/handle/11351... #ScientiaVH
Clinical Practice Recommendations on Kidney Management in Methylmalonic Acidemia: an Expert Consensus Statement From ERKNet and MetabERN
scientiasalut.gencat.cat
January 17, 2025 at 12:26 PM
Everybody can reply
Meet Carol Barahona Ponce - Project Manager 🌟
Check out how Carol’s expertise, competence, and contagious warmth contribute to our work and energize the ERKNet office every day 🇨🇱
Check out how Carol’s expertise, competence, and contagious warmth contribute to our work and energize the ERKNet office every day 🇨🇱
October 15, 2025 at 4:04 PM
Everybody can reply
1 likes
Upcoming ERKNet Webinar! 📢
📝Topic: 𝐅𝐒𝐆𝐒 𝐢𝐧 𝐚𝐝𝐮𝐥𝐭𝐬
🗓️ Date: March 11, 2025
⏰ Time: 4:00–5:00 PM CET
👩⚕️ Speaker: Peter Conlon; Moderator: Tom Nijenhuis
Hosted together with ERA
👉 Register now: https://register.gotowebinar.com/register/2459093380854370650
📝Topic: 𝐅𝐒𝐆𝐒 𝐢𝐧 𝐚𝐝𝐮𝐥𝐭𝐬
🗓️ Date: March 11, 2025
⏰ Time: 4:00–5:00 PM CET
👩⚕️ Speaker: Peter Conlon; Moderator: Tom Nijenhuis
Hosted together with ERA
👉 Register now: https://register.gotowebinar.com/register/2459093380854370650
March 6, 2025 at 11:02 AM
Everybody can reply
1 quotes
2 likes
📝ERKReg Basic Training Session
On Monday, March 3rd, we host our #ERKReg training session again📚.
40 min - Basic info, entering a patient, Do's and Dont's
20 min - Q&A
🔗Register here: www.erknet.org/databases/er...
#ERKNet
On Monday, March 3rd, we host our #ERKReg training session again📚.
40 min - Basic info, entering a patient, Do's and Dont's
20 min - Q&A
🔗Register here: www.erknet.org/databases/er...
#ERKNet
February 20, 2025 at 11:09 AM
Everybody can reply
1 reposts
1 likes
🎤 Our President @flaviagalletti.bsky.social and Uwe Korst, Co-founder and Board Member of PKD International, share their thoughts from the #ERKNet Meeting currently underway in Leuven! 🇧🇪
💛 We’re very happy and proud to be here.
#PKDInternational #ARPKD #ADPKD
@erknet.bsky.social
💛 We’re very happy and proud to be here.
#PKDInternational #ARPKD #ADPKD
@erknet.bsky.social
May 20, 2025 at 3:22 PM
Everybody can reply
2 reposts
4 likes
🔑 K is for KPI Monitoring!
📊 ERKNet tracks 64 key indicators to ensure top care for rare kidney disease patients.
🚀 Data-driven improvements in care, guidelines & performance!
📄 More info: www.erknet.org/fileadmin/fi...
#ERKNet #RareKidneyDiseases #QualityCare #KPIExcellence
📊 ERKNet tracks 64 key indicators to ensure top care for rare kidney disease patients.
🚀 Data-driven improvements in care, guidelines & performance!
📄 More info: www.erknet.org/fileadmin/fi...
#ERKNet #RareKidneyDiseases #QualityCare #KPIExcellence
March 11, 2025 at 9:37 AM
Everybody can reply
2 likes
📝ERKReg Basic Training Session
On Monday, June 30th, 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
On Monday, June 30th, 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
June 17, 2025 at 11:51 AM
Everybody can reply
1 likes
📊 FAQ: CAMS
Ever wondered how ERKNet tracks and supports the amazing work of its member centres? 🔍 Meet CAMS – our official internal tool for monitoring clinical, research & educational activities across the network.
📬Questions?
🔗 erknet.org/monitoring-systems/centre-activity-monitoring-system-cams
Ever wondered how ERKNet tracks and supports the amazing work of its member centres? 🔍 Meet CAMS – our official internal tool for monitoring clinical, research & educational activities across the network.
📬Questions?
🔗 erknet.org/monitoring-systems/centre-activity-monitoring-system-cams
June 10, 2025 at 2:53 PM
Everybody can reply
1 likes
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
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
September 22, 2025 at 2:03 PM
Everybody can reply
1 likes
🧪 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
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
August 27, 2025 at 2:03 PM
Everybody can reply
1 likes
Diagnosis, management and treatment of the #Alport syndrome – 2024 #guideline on behalf of ERKNet, ERA and ESPN
#nephsky
academic.oup.com/ndt/advance-...
#nephsky
academic.oup.com/ndt/advance-...
Diagnosis, management and treatment of the Alport syndrome – 2024 guideline on behalf of ERKNet, ERA and ESPN
Abstract. Glomerular nephropathy resulting from the genetic defects in COL4A3/4/5 genes including the classical Alport syndrome (AS) is the second commones
academic.oup.com
December 3, 2024 at 2:04 AM
Everybody can reply
6 reposts
19 likes