๐ 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
๐งช FAQ: ERKNet Patient-Initiated Research
Have a project idea on rare kidney disease? Patient reps & ePAG members can apply. ERKNet supports one meeting (โค6 people) to launch approved projects.
Apply: www.erknet.org/patients/research/resear...
#ERKNet #RareDisease
๐Meet Sheila, our MSCA PhD Researcher๐
Dive into her slides and explore the incredible contributions sheโs making with the ERKNet team.
#MeetTheTeam #ERKNet #RareKidneyDiseases
๐ERKReg Basic Training Session
On Monday, August 25th, we host our ERKReg training session again๐.
40 min - Basic information about ERKReg.
20 min - Questions and answers.
๐Register right here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease #erknet #training #kidneydisease
๐ฑ M is for Mobile App for Patients!
The NELIA App helps people with rare kidney diseases manage symptoms, track data & support research โ all from their phones.
๐ Learn more: nelia-rgd.com/uk
Download available for Android and Apple.
#ERKNet #NeliaApp #DigitalHealth #RareKidneyDiseases #ABCforRare
๐Meet Ariel, our Biostatistician๐
Dive into her slides and explore the incredible contributions sheโs making with the ERKNet team.
#MeetTheTeam #ERKNet #RareKidneyDiseases
๐ERKReg Basic Training Session
On Thursday, July 31st, we host our ERKReg training session again๐.
40 min - Basic information about ERKReg.
20 min - Questions and answers.
๐Register right here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease #erknet #training #kidneydisease
๐ERKReg Basic Training Session
On Monday, June 30th, we host our ERKReg training session again๐.
40 min - Basic information about ERKReg.
20 min - Questions and answers.
๐Register right here: www.erknet.org/databases/er...
#ERKucation #rarekidneydisease #erknet #training #kidneydisease
๐ 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.
Weโd love to meet you! ๐ฌ๐ #ERA2025 #ERKNet #RareKidneyDiseases #ERKReg #Networking #Vienna
๐ค L is for Liaisons!
๐ What is it?
At ERKNet, "Liaisons" means strategic collaborationโwith professional societies, patient organisations, fellow ERNs, and EU-funded research projectsโto improve care for people living with rare kidney diseases.
#ERKNet #RareKidneyDiseases #CollaborationInCare
๐ค 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! ๐ง๐ช
๐ Weโre very happy and proud to be here.
#PKDInternational #ARPKD #ADPKD
@erknet.bsky.social
Good morning from Leuven ๐ง๐ช, where we're attending the 9th Annual #ERKNet Meeting these days! ๐งฌ
๐ With our President @flaviagalletti.bsky.social, weโre joined by Uwe Korst, co-founder and Board Member of PKD International.
@erknet.bsky.social #PKDInternational #RareDiseases #KidneyHealth
๐โจ Live from the #ERKNet Annual Meeting
๐ The event kicked off this morning in Leuven, Belgium!
๐งโ๐ฌ๐ฅ Our President, @flaviagalletti.bsky.social will be attending until Wednesday, May 21st, alongside scientists from across Europe and patient representatives.
@erknet.bsky.social #PKDInternational
๐ข New Rare Barometer results:
๐น 8 in 10 with rare or rare kidney diseases live with disabilities
๐น 23% unemployed
๐น 50%+ struggle with support
๐น 57โ58% face discrimination
๐ tiny.cc/survey/RB_DailyLife
๐ eurordis.org/voices
Thanks EURORDIS, Rare Barometer & ePAGs!
#RareBarometer #ERKNet #EURORDIS
๐๐ซ๐ค๐ฌ๐ฉ๐ฅ๐๐ข๐ง: ๐๐๐ซ๐ข๐ญ๐จ๐ง๐๐๐ฅ ๐๐ข๐๐ฅ๐ฒ๐ฌ๐ข๐ฌ ๐ โจ
Weโre breaking down peritoneal dialysis (PD) in simple terms! This home-based treatment uses your peritoneum as a natural filter to remove waste - no machine needed. ๐
#PeritonealDialysis #Erksplain #DialysisAtHome #KidneyHealth #PDLife #ERKNet
๐ข Learn more about ERKReg Training Sessions! ๐ฉบ๐
Join our training sessions to master data entry, best practices & registry updates. Open to ERKNet members & nephrology professionals worldwide!
๐ Sign up now: www.erknet.org/databases/er...
#ERKReg #Nephrology #MedicalTraining #ERKNet #StayInformed
๐ K is for KPI Monitoring!
๐ ERKNet tracks 64 key indicators to ensure top care for rare kidney disease patients.
๐ Data-driven improvements in care, guidelines & performance!
๐ More info: www.erknet.org/fileadmin/fi...
#ERKNet #RareKidneyDiseases #QualityCare #KPIExcellence
๐ข ERKNet Clinical Exchange Programme โ Apply Now! (Members only)
Gain hands-on experience and expand your knowledge in rare kidney diseases.
๐ Learn more: www.erknet.org/education-tr...
๐ Find our Application Survey here: www.surveymonkey.com/r/B2CCJP5
#ERKNet #ClinicalExchange
๐ ๐๐๐ซ๐ ๐๐ข๐ฌ๐๐๐ฌ๐ ๐๐๐ฒ at the #ERKNet Office! ๐
On days like this, we love taking a moment to #engage with each otherโreminding ourselves why we do what we do and who weโre doing it for ๐ฅโจ
A little fun, a little learning, and a whole lot of appreciation for the #RareDisease community! ๐ช
๐ERKReg Basic Training Session
On Monday, March 3rd, we host our #ERKReg training session again๐.
40 min - Basic info, entering a patient, Do's and Dont's
20 min - Q&A
๐Register here: www.erknet.org/databases/er...
#ERKNet
๐Upcoming webinar!
Optimizing PD with a focus on Incodextrin
๐๏ธ Feb. 11th
โฐ4-5 PM CET
๐ฉโโ๏ธDagmara Borzych-Duzalka
โ๏ธRegister here: register.gotowebinar.com/register/803668607263054...
#ERKNet #Webinar #Rarekidneydisease #MedicalEducation #Icodextrin
๐ERKReg Basic Training Session
On Monday, February 10th, we host our #ERKReg training session again๐.
40 min - Basic info, entering a patient, Do's and Dont's
20 min - Q&A
๐Register here: www.erknet.org/databases/erkreg-trainin...
#ERKNet
๐ข ๐๐๐ฅ๐ฅ ๐๐จ๐ซ #๐๐๐ฌ๐ญ๐ซ๐๐๐ญ๐ฌ: ERKNet Annual Meeting 2025
#ERKNet members only! Until this Wednesday, Feb. 5th!
Your chance to showcase your work for #R๐๐ซ๐K๐ข๐๐ง๐๐ฒD๐ข๐ฌ๐๐๐ฌ๐ ๐ซ๐๐ฌ๐๐๐ซ๐๐ก or a ๐๐ก๐๐ฅ๐ฅ๐๐ง๐ ๐ข๐ง๐ ๐๐ฅ๐ข๐ง๐ข๐๐๐ฅ ๐๐๐ฌ๐.
๐ ๐๐ฎ๐๐ฆ๐ข๐ฌ๐ฌ๐ข๐จ๐ง ๐๐ฎ๐ข๐๐๐ฅ๐ข๐ง๐๐ฌ & ๐๐จ๐ซ๐ ๐๐ง๐๐จ: www.erknet.org/events/9th-e...
#Nephrology #KidneyDisease
Welcome to #ERKNet - the European Reference Network for #RareKidneyDiseases
With 72 expert centres across 24 #European countries, we provide top quality healthcare.
Over 70,000 #patients benefit from our #expertise in rare kidney disorders. ๐
Deeply grateful for the work of ERKNet and Arend Bokenkamp and his dream team of nephrologists! #ERKNet, #Dentdiseasefoundation, #DDF, #Dent, #FEDERG, Check: academic.oup.com/ndt/advance-...
