ERKNet: Network for Rare Kidney Diseases
ERKNet: Network for Rare Kidney Diseases
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1. Morbus Fabry und Morbus Fabry Selbsthilfegruppe e.V.
Interviewed wurde Berthold Wilden, Vorstand der Morbus Fabry Selbsthilfegruppe e.V. von Uwe Korst - Bundesverband Niere e.V.
Projektidee: EwenLife RareDisease, Estelle Dubois
Schnitt: Marc Ferdinand
มุมมอง: 19

วีดีโอ

2. Auswirkungen von Morbus Fabry auf Alltag und Beruf
มุมมอง 1121 วันที่ผ่านมา
Interviewed wurde Berthold Wilden, Vorstand der Morbus Fabry Selbsthilfegruppe e.V. von Uwe Korst - Bundesverband Niere e.V. Projektidee: EwenLife RareDisease, Estelle Dubois Schnitt: Marc Ferdinand
3. Umgang mit Morbus Fabry
มุมมอง 2121 วันที่ผ่านมา
Interviewed wurde Berthold Wilden, Vorstand der Morbus Fabry Selbsthilfegruppe e.V. von Uwe Korst - Bundesverband Niere e.V. Projektidee: EwenLife RareDisease, Estelle Dubois Schnitt: Marc Ferdinand
3. Dealing with Fabry disease
มุมมอง 1321 วันที่ผ่านมา
Berthold Wilden, chairman of the Morbus Fabry Selbsthilfegruppe e.V. was interviewed by Uwe Korst - Bundesverband Niere e.V. Project idea: EwenLife RareDisease, Estelle Dubois Editing: Marc Ferdinand
1. Fabry Disease and Morbus Fabry Selbsthilfegruppe e.V.
มุมมอง 1421 วันที่ผ่านมา
Berthold Wilden, chairman of the Morbus Fabry Selbsthilfegruppe e.V. was interviewed by Uwe Korst - Bundesverband Niere e.V. Project idea: EwenLife RareDisease, Estelle Dubois Editing: Marc Ferdinand
2. Effects of Fabry disease on everyday life and work
มุมมอง 2821 วันที่ผ่านมา
Berthold Wilden, chairman of the Morbus Fabry Selbsthilfegruppe e.V. was interviewed by Uwe Korst - Bundesverband Niere e.V. Project idea: EwenLife RareDisease, Estelle Dubois Editing: Marc Ferdinand
ERKNet Webinar: Connect News and Innovations | 10.10.2024
มุมมอง 6428 วันที่ผ่านมา
ERKNet introduces a new webinar format for our internal ERKNet members, patients representatives and associated partners. This webinar aims to regularly update our network on the latest development, challenges, and opportunities for engagement in the field of rare kidney diseases. Agenda Upcoming events: 0:50 Launch of IgA subregistry: 4:08 IgA and friends: 25:35 ERKNet/LeiLa Guideline app: 26:...
Meet our ERKNet ePAG - Virginia Guillon
มุมมอง 224 หลายเดือนก่อน
Meet our ERKNet ePAG Virginia Guillon representing the Gitelbart association in France. ▶️ Learn more about her organisation on gitelbart.fr/en/presentation-et-adhesion-a-lassociation-gitelbart-english/ ▶️ Learn more about the ERKNet ePAGs on www.erknet.org/patients/erknet-epags/presentation-of-the-patient-representatives
ERKNet/EURORDIS Webinar 'Patient Involvement in Guidelines' by Matt Bolz Johnson
มุมมอง 625 หลายเดือนก่อน
In this ERKNet/EURORDIS webinar, Matt Bolz-Johnson, an expert in patient advocany and healthcare guidelines, delves into the critical role that patients play in the development and implementation of clinical guidelines. He discusses how patient perspectives can enhance the relevance, quality, and acceptance of clinical guidelines, ensuring that they truly meet the needs of those they are design...
European Rare Kidney Disease Registry (ERKReg) - explanatory video for patients
มุมมอง 537 หลายเดือนก่อน
In this video, we break down what ERKReg is and why it's crucial to pool data on rare kidney diseases across Europe. By gathering information from patients throughout Europe, we can foster groundbreaking research, improve the quality of life for those affected, and enhance healthcare services. What You'll Learn: What is ERKReg? Discover the first and largest Europe-wide registry dedicated to ra...
ERKReg Advanced Training Session 13.05.24 - Bartter/Gitelman subregistry record
มุมมอง 427 หลายเดือนก่อน
Karl Peter Schlingman presents the Bartter and Gitelman subregistry. The aims are to - provide demographic information - identify patient cohorts - perform genotype-phenotype correlation - monitor therapy and side effects - gather information on long-term outcome concerning kidney function and proteinuria
ERKReg Advanced Training Session 13.05.24 - pediatric SLE nephritis registry
มุมมอง 317 หลายเดือนก่อน
Adriana Suhlrie gives insights on the ERKNet/ESPN pediatric SLE nephritis subregistry. The objective of ESPN - ERKNet LN registry is to collect data on long term renal outcome and its determining factors in childhood onset LN (including transition) and detect disease and treatment associated comorbidities in order to allow benchmarking, develop research hypothesis, improve treatment and outcome...
ERKReg Advanced Training Session 13.05.24 - dRTA subregistry
มุมมอง 147 หลายเดือนก่อน
Francesco Emma presents the subregistry on distal renal tubular acidosis, which is a joint effort of ERKNet an ESPN. The registry aims to capture data on the presentation, treatment and long-term outcome in dRTA. These will be used to assess the impact of treatment on long-term outcome and to establish criteria for adequate treatment and monitoring. Find more about the dRTA subregistry: www.erk...
Advanced Training Session 13.05.24 - CompCure subregistry and cohort study
มุมมอง 237 หลายเดือนก่อน
Franz Schaefer introduces CompCure, which is a patient-driven association that is devoted to improve the lives of patients with complement-mediated disorders. CompCure collaborates with ERKNet to establish a prospective cohort study of C3C/icMPGN study by setting up a registry, ensuring standardized diagnostic work-up and creating a biobank. Find more about CompCure: www.compcure.org/ www.erkne...
ERKReg Advanced Training Session 03.04.24 - esCapeKD subregistry
มุมมอง 177 หลายเดือนก่อน
Franz Schaefer introduces the esCapeKD subregistry, which is a prospective cohort study of children with chronic kidney disease.
ERKReg Advanced Training Session 03.04.24 - Central Office Update
มุมมอง 397 หลายเดือนก่อน
ERKReg Advanced Training Session 03.04.24 - Central Office Update
Meet our ERKNet ePAG - Etienne Cosyns
มุมมอง 29ปีที่แล้ว
Meet our ERKNet ePAG - Etienne Cosyns
Meet our ERKNet ePAG - Flavia Galletti
มุมมอง 30ปีที่แล้ว
Meet our ERKNet ePAG - Flavia Galletti
Meet our ERKNet ePAG - Rossella Ferrari
มุมมอง 18ปีที่แล้ว
Meet our ERKNet ePAG - Rossella Ferrari
Meet our ERKNet ePAG - Heidi Zealey
มุมมอง 22ปีที่แล้ว
Meet our ERKNet ePAG - Heidi Zealey
Meet our ERKNet ePAG - David van Bennekom
มุมมอง 152ปีที่แล้ว
Meet our ERKNet ePAG - David van Bennekom
Meet our ERKNet ePAG - Christian Scheidler
มุมมอง 79ปีที่แล้ว
Meet our ERKNet ePAG - Christian Scheidler
Meet our ERKNet ePAG - Christiane Mockenhaupt
มุมมอง 46ปีที่แล้ว
Meet our ERKNet ePAG - Christiane Mockenhaupt
ERKNet - We would like to introduce ourselves
มุมมอง 204ปีที่แล้ว
ERKNet - We would like to introduce ourselves
Srečanje s predstavniki bolnikov mreže ERKNet (ePAG) (EN/SL Subs)
มุมมอง 112 ปีที่แล้ว
Srečanje s predstavniki bolnikov mreže ERKNet (ePAG) (EN/SL Subs)
ERKNet hasta temsilcileriyle tanışın (ePAGs) (EN/TR Altyazı)
มุมมอง 52 ปีที่แล้ว
ERKNet hasta temsilcileriyle tanışın (ePAGs) (EN/TR Altyazı)
Faceți cunoștință cu reprezentanții pacienților ERKNet (ePAGs) (EN/RO Subs)
มุมมอง 122 ปีที่แล้ว
Faceți cunoștință cu reprezentanții pacienților ERKNet (ePAGs) (EN/RO Subs)
Conheça os representantes dos doentes da ERKNet (ePAGs) (EN/PT Subs)
มุมมอง 22 ปีที่แล้ว
Conheça os representantes dos doentes da ERKNet (ePAGs) (EN/PT Subs)
Incontrare i rappresentanti dei pazienti di ERKNet (ePAG) (EN/Sottotitoli IT)
มุมมอง 42 ปีที่แล้ว
Incontrare i rappresentanti dei pazienti di ERKNet (ePAG) (EN/Sottotitoli IT)
Rencontrez les représentants des patients ERKNet (ePAGs) (EN/FR Subs)
มุมมอง 102 ปีที่แล้ว
Rencontrez les représentants des patients ERKNet (ePAGs) (EN/FR Subs)