Podcast
Recently Marianne had the great pleasure to discuss the challenges and opportunities related to the management of rare kidney diseases with Adrian Ley in his podcast “Funktionieren”. You are very welcome to listen in (in German). https://funktionieren.podbean.com/
Newsletter.
It is with a deep sense of gratitude that we can close 2024. We thank all our partners for productive collaboration and precious support, which has led to real progress. You can read more about this here.
Presentation at the Escape Network meeting
On 29 November Giulia Bassanese and Marianne Silkjær Nielsen gave an update on CompCure and an associated project to drive early diagnoses of complement-mediated kidney diseases at the Escape Network Meeting in Heidelberg. It was a huge pleasure and privilege to exchange with this dedicated group of outstanding and scientifically driven paediatric nephrologists from all over Europe and beyond.
Swiss Rare Disease Action Forum
On 26 November 2024 Esther had the opportunity to share her perspectives on what reality looks like when living with a rare disease during the Swiss Rare Disease Summit. The event was organized by the Rare Disease Action Forum and participated by politicians, leaders from health insurance companies, patient organizations, medical experts, pharmaceutical companies, and other relevant stakeholders.
Danish Society of Paediatric Nephrology.
On 6 November 2024 Marianne Silkjær Nielsen, Giulia Bassanese and Sebastian Myrup Hansen had the great pleasure of joining a meeting of the Danish Pediatric Nephrology Society at Rigshospitalet in Copenhagen to give a presentation on CompCure. It was inspiring to discuss the needs and opportunities to improve outcome in complement-mediated kidney diseases with nephrologists from all over Denmark, and also from Sweden.
We had the great pleasure of hosting the aHUS, C3G and IC-MPGN patient conference in Berlin together with the German self-help group for complememt-mediated diseases from the 14th to 15th of September 2024. There were more than 65 participants, primarily from the German speaking region, but also from other European countries and beyond.
During the weekend presenters gave very interesting presentations about the diseases, their underlying biology, therapeutic, psychologic, and dietary aspects, etc.
Patients and caregivers were also actively involved, openly sharing their experiences and insights.
It was extremely touching and reassuring to experience the strong level of support across all the participants, which reminds us that there should also not be big walls in rare diseases; we are all stronger when we share our knowledge, work together and support each other.
We want to thank the presenters and participants and last but not least Novartis and Alexion for supporting the event, both financially and educationally.
Marianne represented CompCure at the CORD Summit in Shanghai. CORD is the biggest Organization for Rare Disorders in China. The commitment and energy evolving around concrete proposals on how to address the unmet needs in rare diseases were both inspiring and encouraging. Marianne had the opportunity to present CompCure and connected with the leadership of CORD and Chinese experts in rare kidney diseases. This has laid a foundation for exciting future collaborations focused on complement-mediated kidney diseases.
CompCure at the ERKNet Annual Meeting in Venice
We are thrilled to share that CompCure recently attended the ERKNet annual meeting held in the beautiful city of Venice, Italy. The event brought together leading experts and stakeholders in the field of rare kidney diseases to discuss and share the latest advancements and strategies for improving patient outcomes. At the conference, our dedicated team members engaged in valuable discussions, attended insightful sessions, and networked with peers from Europe. The knowledge and experiences gained from this event are invaluable and will greatly contribute to our ongoing efforts to support patients living with rare kidney diseases. Hear some of CompCure's experts’, who attended the conference, perspectives on the key takeaways and the impact of this event on our work.
GPN Presentation
Marianne joined the annual GPN (Gesellschaft für Pädiatrische Nephrologie) meeting in Hamburg where she talked about CompCure's main focus and goals to drive awareness about C3G and IC-MPGN. The lecture gave rise to a lot of inspiring and encouraging questions, comments and conversations where people showed interest in and support to CompCure.
World Kidney Day
CompCure joined World Kidney Day on the 14th of March which was a great opportunity to raise awareness on our main focus to secure early diagnosis and appropriate therapeutic interventions for C3G and IC-MPGN.
Rare Disease Day
CompCure took part in Rare Disease Day on the 29th of February to shine the light on the unmet needs of approximately 400 million people around the world who are affected by a rare disease. People involved in CompCure contributed to the video.
It is with pride and humbleness that we can look back at 2023, and recognize the accomplishments achieved by our outstanding team and dedicated collaboration partners. Below you find some highlights, which support our commitment to improve outcome in C3G and IC-MPGN.
A huge thank you to all involved parties, and especially to all the patients and their treating nephrologists for trusting us their data. We would also like to thank our Board, the Steering Committee and the team in Heidelberg for bringing our strategy to life in close partnership with the ERKnet. Last but not least we thank our industry partners for their broad commitment to our community. I am confident, that together we can realize our ambition to build the biggest C3G and IC-MPGN registry globally.
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The CompCure registry recruited 75 patients in 8 weeks.
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CompCure was presented by Franz Schaefer at the annual ERK network meeting.
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CompCure was presented by Franz Schaefer and Marianne Silkjaer Nielsen at the ERA congress.
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Early diagnosis was discussed by Marina Vivarelli, Marina Noris, Fadi Fakhouri
and Marianne Silkjaer Nielsen and broadcasted on MedScape/WebMd.
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A poster on CompCure was presented by Giulia Bassanese at the ESPN congress.
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CompCure was presented at the German and US patient meetings.
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CompCure was showcased twice at the Escape network meetings.
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CompCure is expanding globally, e.g. with health institutions in Seoul joining the registry.
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The awareness rare kidney diseases, incl. C3G and IC-MPGN
has been raised in different medias.
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An international CompCure patient advocacy committee is currently
being established to give patients a stronger and united voice.
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CompCure partnered with EKHA with the aim of supporting early diagnosis,
e.g. through implementation of broad screening programs.
We look forward to 2024 where CompCure will continue to work on increasing the understanding of C3G and IC-MPGN, drive early diagnosis, and optimal treatment for the individual patient. The continue to strengthen the awareness of these serious kidney diseases, we are grateful for the support and collaboration with Bent, Sebastian and Anders.
We wish all of you Happy Holidays and all the best for 2024.
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.
Read the article in pdf-format by clicking the image above.
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 Joanna.sladowska: Joanna.sladowska@med.uni-heidelberg.deor 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.
See the movie with log in - register for free, in a few easy steps
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/
We are delighted to announce that Novartis is supporting CompCure. https://www.novartis.com/
