Katrine feared for her son's health – hereshe found help
For nine years, Katrine's son Theo has lived with a rare kidney disease. Ithas not only been hard for Theo to be in and out of hospitals – thedisease has also had consequences for Katrine.
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Theo knew something was wrong with him, but what it was, no one could tell him.
It took time before he was given a diagnosis and the right treatment. Theo Maigaard has suffered from a rare kidney disease since he was nine years old.
For Theo Maigaard, 18, life took a drastic turn at the age of nine.
Read the article in pdf-format by clicking the image above.
To increase awareness of CompCure and the registry we are building, Giulia Bassanese prepared a poster for the ESPN conference, which took place in Vilnius in September 2023. If you are interested in learning more about the CompCure registry, and how to enroll, please contact Giulia giulia.bassanese@med.uni-heidelberg.de.
The Kidneeds C3G and DDD family conference took place in Iowa from 13-14 Oct 2023.
It was touching and inspiring to connect with patients and families from all over North America, and listen to their journeys and experiences. The needs of C3G and IC-MPGN patients varies significantly, and so does the accessible level of care. In this context, it was encouraging to learn about the high standards of specialized care offered at the university of Iowa, Stead Family Children's hospital by the integrated team of leading clinicians and scientists at the Molecular Otolaryngology and Renal Research Laboratories - MORL.
CompCure was presented as an international initiative driven by a team of leading experts based in Europe. It was reassuring and inspiring to discuss common interests and potential opportunities for collaboration.
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:
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The awareness of the diseases will be broadened, also leveraging the
ERKnetwork which counts >100 specialized units from 24 European countries
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Profound evidence will be generated through a comprehensive international registry
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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.
https://www.erknet.org/events/7th-annual-meeting-impressions
Sep. 29 - Oct. 2, 2022. Marianne Silkjaer Nielsen had the pleasure of participating in the KDIGO conference "Controversies on the role of complement in kidney disease".
A global panel of multidisciplinary clinical and scientific experts discussed the role of complement in a spectrum of kidney diseases.
The scientific knowledge of these complex and heterogeneous diseases has advanced significantly over the last decade, but there are still many controversies and knowledge gaps.
The strong need for approved, safe and efficacious therapies remains. Promising programs from several pharmaceutical companies and inspiring conversations with passionate experts and industry colleagues give hope for the future! https://kdigo.org/
We are thrilled to announce that Sobi is supporting CompCure. https://www.sobi.com/