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European Reference Networks

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ERKNet@EuRefNetwork·
10 Nov 1326232266918555649

This Thursday! ⬇️

This Thursday! ⬇️
IPNA Ped Nephrology@IPNA_PedNeph

Don´t miss the second part of the webinar on Nephrotic Syndrome, this Thursday at 4pm CET with Agnes Trautmann.

👉 Register here: https://bit.ly/32q9rzV

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ERKNet@EuRefNetwork·
15 Oct 1316758849018306561

📅Join 2nd Baltic #Fabry Expert Meeting | Organized online / Oct 30, 2020 ✅ Register here: http://tiny.cc/0q8msz

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aHUS Alliance Action@aHUSAllianceAct·
24 Sep 1309109075259531264

It’s aHUS Awareness Day, so what’s new regarding #aHUS aka #SHUa in the #EU? @EuRefNetwork, as the European Reference Network for Rare Kidney Diseases, has impact & reach beyond the EU re atypical HUS & TMA research. #nephrology https://www.ahusallianceaction.org/erknet-2020-update/
#renal #research

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IPNA Ped Nephrology@IPNA_PedNeph·
1 Sep 1300704560604999680

Webinars are back! In a week you can attend @EuRefNetwork - @ESPNSociety Webinar on Autosomal Dominant Polycystic Kidney Disease.

Follow the link for registrations and forget to mark the dates in your agenda for the upcoming IPNA Webinars.
👉https://bit.ly/2YSOrQw

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CJASN@CJASN·
27 Aug 1299050948850069505

Preimplantation genetic testing helps prospective parents prevent passing on disease-causing mutations to their offspring. A clinical overview analyzes 25 years of preimplantation genetic testing for monogenic kidney disease in The Netherlands. http://bit.ly/CJN03550320

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YOUR CENTRE
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Link to: Rare Kidney Diseases
YOUR KIDNEY DISEASE

The European Rare Kidney Disease Reference Network

Welcome to ERKNet for Patients

and resources to assist you

Offering specific disease information

and their carers

Providing support for patients with rare kidney conditions

News

Patient satisfaction Survey Results („H-Care“)

News
Dear ERKNet members, partners and friends, ERKNet in collaboration with the Eurodis three other ERNs conducted a pilot H-CARE Survey aimed at determining patient experience and satisfaction with their care within ERNs. The survey that included…
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October 16, 2020
https://patients.erknet.org/wp-content/uploads/h-care-study-2020.jpg 1094 1776 umlaut https://patients.erknet.org/wp-content/uploads/erknet-logo_forpatients.png umlaut2020-10-16 15:21:432020-10-16 15:23:42Patient satisfaction Survey Results („H-Care“)

ERKNET Survey on Fanconi Bickel Syndrome

Uncategorized
The ERKNet working groups on metabolic and stone disease is pleased to present you a survey on the rare condition of FANCONI BICKEL SYNDROME, also known as GLYCOGENOSIS XI.
Read more
June 24, 2020
https://patients.erknet.org/wp-content/uploads/ERKNET-Survey-on-Fanconi-Bickel-Syndrome.jpg 1001 1500 umlaut https://patients.erknet.org/wp-content/uploads/erknet-logo_forpatients.png umlaut2020-06-24 10:41:082020-06-24 11:16:40ERKNET Survey on Fanconi Bickel Syndrome

ERKNet Newsletter: Network achievements, evaluation of progress and post-meeting feedback

Uncategorized
The ERKNet Virtual Annual Meeting was a challenging project but proved to be a great success. More than 220 participants attended the 5-day-long meeting via the Zoom platform. The conference included 2 plenary, 9 workgroup and 7 taskforce sessions.
Read more
June 20, 2020
https://patients.erknet.org/wp-content/uploads/erknet-newsletter.jpg 1600 2400 umlaut https://patients.erknet.org/wp-content/uploads/erknet-logo_forpatients.png umlaut2020-06-20 11:52:532020-06-24 11:58:25ERKNet Newsletter: Network achievements, evaluation of progress and post-meeting feedback
Page 1 of 212

What is a European Reference Network?

https://patients.erknet.org/files/ERN_2020-10_EN.mp4

The Rock of Life

https://patients.erknet.org/files/rock_of_life.mp4

© 2021 – ERKNet for Patients – The European Rare Kidney Disease Reference Network
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