improve outcome in
C3G and IC-MPGN
CompCure brings together patients/caregivers, clinicians, leading multidisciplinary experts, industry partners, and other relevant stakeholder with a shared commitment to improving outcome in C3G and IC-MPGN.
CompCure Kick-off meeting successfully held in Heidelberg on 10 May 2022.
About C3G and IC-MPGN
C3G and IC-MPGN are ultra rare and chronic progressive kidney diseases. They commonly lead to proteinuria, hematuria, hypocomplementemia, hypertension, end-stage kidney disease, and several other severe complications that can affect different organ-systems.
More than half of the patients will reach end stage renal disease (ESRD) 10 years after diagnosis. The diseases recur at a high rate in the allografts after kidney transplantation.
CompCure is a non-profit association that was founded by parents of a girl with IC-MPGN, in collaboration with leading European experts.
The primary goal of CompCure is to improve the outcomes for individuals with C3G and IC-MPGN. This is accomplished by raising awareness of rare kidney diseases, improving the diagnostic rates, generating evidence through research, establishing a comprehensive international registry, promoting the widespread adoption of clinical guidelines, and providing support for the development of new therapies.
CompCure operates through a strong collaboration between patients, physicians, industry partners, and other relevant stakeholders.
About the ERK network and registry
The European Rare Kidney network (ERKnet) is one of 24 rare disease networks financed and supported by the European Union. The ERKnet counts more than 100 specialized units across 24 countries.
The ERKnet has established the European Rare Kidney Registry (ERKreg) which includes data from more than 70.000 patients with rare kidney diseases.
The most recent news
25 September is C3G and IC-MPGN awareness day.
In this connection, it was a pleasure to shine the light on C3G, IC-MPGN and aHUS during the annual meeting in the German “Selbsthilfegruppe” in Cologne over the weekend. The event was participated by ~70 patients and caregivers from Germany, Austrua and Switzerland. It was very interesting and touching to listen to the patient’s journeys, the challenges, and to discuss management opportunities now and in the future with experienced nephrologists from leading German treatment centers.
CompCure, and the importance of establishing an international registry was also presented. We are grateful the commitment and support we are also receiving from the patient community.
Getting an early and exact diagnosis with C3G and IC-MPGN is critical to ensure that the right management and therapies are initiated. Yet, the diagnostic journey is long for many patients in our community, and this has negative impact on outcome. One of CompCure’s objectives is to ensure that more patients are getting diagnosed early. This starts with broader awareness about the diseases, and knowledge of what it takes to diagnose them. In the MedScape video, Marina Vivarelli, Marina Noris, Fadi Fakhouri and Marianne Silkjær Nielsen discuss approaches on how to make sure that more patients are being diagnosed early and precisely.
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During the European Renal Association (ERA) congress in Milan, which took place from 15-18 June 2023, Marianne Silkjær Nielsen had the pleasure of discussing a collaborative approach towards improving outcome in C3G and IC-MPGN with Franz Schaefer and Fadi Fakhouri at the Novartis symposium.
Through our partnership with leading experts, clinicians, patient organizations, pharmaceutical companies and other relevant stakeholders, CompCure will help driving better outcome in C3G and IC-MPGN:
The awareness of the diseases will be broadened, also leveraging the
ERKnetwork which counts >100 specialized units from 24 European countries
Profound evidence will be generated through a comprehensive international registry
Activities to advance science and the development of new therapies will be encouraged and supported.
We are thankful for all the support we are receiving, and we are excited to continue the journey from unmet needs to better outcome in C3G and IC-MPGN.
An update on CompCure was provided by Franz Schafer and Giulia Bassanese at the 7th ERKNet Annual Meeting, which took place in Heidelberg from 9-11th May 2023.
The feedback from participating Nephrologists joining from all over Europe was very positive, and there was broad interest in supporting the initiative.