On the Road with ERKReg ๐๐ซ๐ท
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! ๐๐
#ERKNetOnTheRoad #RareKidneyDiseases #Paris #ERKReg
๐Meet Sheila, our MSCA PhD Researcher๐
Dive into her slides and explore the incredible contributions sheโs making with the ERKNet team.
#MeetTheTeam #ERKNet #RareKidneyDiseases
On the Road with ERKReg ๐๐ซ๐ท
At Hรดpital Femme Mรจre 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! ๐๐
#ERKNetOnTheRoad #RareKidneyDiseases #Lyon #ERKReg
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
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
Discussion on IgA Nephropathy, Part of the #NephMadness PodCrawl
๐ Tune in: globalkidneycarepodcast.transistor.fm/episodes/sea...
Raise your voice, share knowledge, and help improve outcomes for those living with IgAN.
#KidneyHealthMatters #RareKidneyDiseases #Nephrology
Thank you, @khon2news.bsky.social News for inviting us this morning to discuss Rare Kidney Disease and the @nkf-professionals.bsky.social (Hawaii). โญ๏ธ
Join us for the NKF Hawaii Kidney walk on Saturday๐ค#PatientAdvocacy #RareKidneyDiseases
kidneywalk.org/hawaii
Explore #RareKidneyDiseases with #๐๐๐๐๐๐ญ ๐๐๐๐ข๐ง๐๐ซ๐ฌ ๐
Led by experts, these sessions cover diagnosis, treatment & cutting-edge research๐ฌ
Our webinars are free & open to everyone๐ฅ
๐๐๐ ๐ข๐ฌ๐ญ๐๐ซ ๐ก๐๐ซ๐: https://www.erknet.org/education-training/next-webinars
๐๐๐จ๐ซ๐ฅ๐ ๐๐ข๐๐ง๐๐ฒ ๐๐๐ฒ๐
We're constantly amazed by all the work being done - in #RareKidneyDiseases & in #KidneyHealth and research overall๐ Weโre grateful to be part of such a dedicated community
So, today we ask: "๐๐ซ๐ ๐ฒ๐จ๐ฎ๐ซ ๐ค๐ข๐๐ง๐๐ฒ๐ฌ ๐จ๐ค๐๐ฒ?"๐ฅ
Early detection is๐ - get checked & protect your kidney health
In collaboration with @georgeinstitute.bsky.social India, the ISN led a groundbreaking study on the economic impact of #RareKidneyDiseases, now published in @kireports.bsky.social
๐ Read the full "Scoping Review of Economic Analyses of Rare Kidney Diseases": www.kireports.org/article/S246...
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
1/n ๐ซ Rare Kidney Diseasesโover 150 inherited conditions & counting! ๐งฌ
Whatโs the biggest challenge in managing them? ๐ค
๐ณ๏ธ Vote below! โฌ๏ธ
#NephTwitter #RareKidneyDiseases #MedEd
1.Small patient numbers
2.Lack of biomarkers
3.Lack of standard of care
4.All of the above
๐จ #Tweetorial Alert! ๐จ
๐ฌ Rare Kidney Diseases: Unmasking the Zebras in Nephrology! ๐ฆ๐ก
Join me, Dr. Mythri Shankar, @nephromythri.bsky.social as we explore fascinating, rare kidney diseasesโbecause not every kidney case is a horse! ๐
Stay tuned! ๐งต๐ #NephTwitter #RareKidneyDiseases #MedEd
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
#C3G & #IC-MPGN are both #rarekidneydiseases that lead to #kidneydamage over time.
If you are living with or caring for a loved one diagnosed with C3G or IC-MPGN, sign up to be interviewed! USA only
LINK: rarelove.jotform.com/243101594703...
Receive $200 for successfully participating.
