About CompCure
CompCure is a Danish non-for-profit Association founded by Marianne Silkjær Nielsen and Thomas Rask Nielsen who are parents to an affected child.
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You can learn about their rare kidney disease journey in this video.
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The CompCure Association pursues four main objectives
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Strengthen the understanding of complement driven kidney diseases, including the pathophysiology, natural history, and overall burden of disease to patients, caregivers, and society.
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Improve the long-term outcome for patients through early diagnoses, improved treatment guidelines, development and access to disease modifying medicine and ultimately curative therapies.
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Increase the awareness of complement driven kidney diseases broadly across healthcare institutions, health care authorities, regulators, and other relevant stakeholders.
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Develop a platform and infrastructure that will produce best practices on how to generate evidence, knowledge, and productively address the high unmet medical needs and rare disease burden beyond kidney diseases.
The objectives are sought achieved by
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Facilitating productive collaboration between leading scientists, clinicians, patients, pharmaceutical companies, regulators and anybody else who could support progress towards better diseases understanding and ultimately curative therapies.
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Establishing a best-in-class international patient registry which will consolidate relevant data such as clinical information, therapeutic approaches, genetic information, quality of life related outcome, overall health economic burden of disease, etc.
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Making the information in the patient registry available for participating health care professionals, institutions, companies undertaking relevant scientific and clinical research, and other individuals or legal entities with valid interests.
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Developing an international platform which can be used to address the unmet medical needs in other rare disease for the benefit of patients and societies.
The responsibility of driving the scientific projects will be managed out of Universitätsklinikum Heidelberg in collaboration with Aarhus University Hospital.
Board of Directors
Marianne Silkjær Nielsen
Founder and Chair.
Mother of a girl with IC-MPGN, which led her to co-found CompCure to improve outcomes across complement-mediated kidney diseases. Professionally Marianne works as a strategy consultant with focus on rare diseases. Marianne understands the issues associated with rare diseases from different angles, also as she brings 20 years of experience from various senior leadership positions within the pharmaceutical- and rare diagnostics industries. ​​
Jørgen Frøkiær
Professor and Head of the Department of Clinical Medicine at Aarhus Universitet, Denmark. Specialized in clinical physiology and nuclear medicine. Has uncovered basic physiological mechanisms of importance for the understanding of kidney physiology and water and salt metabolism.
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Søren Rittig
Professor of Pediatrics and Program Chief for the future Aarhus Children’s Hospital at Aarhus University Hospital, Denmark. Specialized in pediatric nephrology. Have researched through many years in causes and treatment of bladder dysfunction in children as well as in regulation of salt and water balance. Furthermore, he has also supervised several PhD projects on genetics, pathogenesis, and treatment of nephrotic syndrome.
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Thomas Rask Nielsen
Secretary of the Board of Directors.
Father of a girl with IC-MPGN. This led co-found CompCure with the aim of addressing the unmet medical needs associated with complement-mediated kidney diseases. Professionally Thomas is heading up legal, compliance quality and business development for a pharmaceutical company.
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The Steering Committee
CompCure is governed by a Steering Committee composed of leading European clinical experts, complement researchers as well as representatives of the patient community.
Franz Schaefer
Professor of Pediatrics and Chief of Pediatric Nephrology at Heidelberg University Hospital, Germany. Serves on numerous medical society councils and is the current president of the International Pediatric Nephrology Association (IPNA), coordinator of the European Rare Kidney Network (ERKNet), and leading the Steering Committee of CompCure.
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Giuseppe Remuzzi
Professor in Nephrology, Director of the Mario Negri Institute for Pharmacological Research, Italy and Director of the Division of Nephrology and Dialysis of the Bergamo Hospital, Italy. Is a pioneer in nephrology who has delivered extraordinary scientific contributions in the field of complement-mediated kidney diseases.
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Marina Vivarelli
Trained in Pediatrics at the University of Pavia, Italy and completed a Research Fellowship at Harvard University-Children’s Hospital Boston. Since 2023, she heads the Laboratory of Nephrology and the Clinical Trial Center of the Bambino Gesù Children’s Hospital, Rome Italy. She co-chairs the ERKNet Working Group on TMAs and is on the Executive Committee of the ERKRegistry, has co-chaired IPNA guidelines for CNS, SRNS, SSNS and IgAN/V, KDIGO Guidelines of glomerular diseases, National Kidney Foundation and KDIGO projects on complement-mediated renal diseases. She is a Fellow of the ESPN and on the Scientific Advisory Board of ERA, a member of the Editorial Board of KI and JASN.
Jack Wetzels
Emeritus Professor of Nephrology in the Department of Nephrology at Radboud University Nijmegen, Netherlands. Committed to teaching and research with emphasis on the diagnosis and treatment of patients with glomerular diseases. Participated in the development of the KDIGO guidelines for glomerular diseases (2012 and 2020). Past coordinator of the Radboud expert center for rare kidney diseases, member of ERKNet. Participated in research and clinical care of patients with complement mediated diseases such as aHUS and C3G.
Gema Ariceta
Head of the Department of Pediatric Kidney Disease at the University Hospital Vall d’Hebron, Spain, and Professor of Pediatrics at Autonomous University of Barcelona School of Medicine, Spain. She is a co-founder member of the European Rare Kidney Disease Network (ERKNet).
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Peter Zipfel
Professor and Head of the Department of Infection Biology at Friedrich-Schiller-University Jena, Germany. Research in areas of immune escape of human pathogenic micro-organisms, infections-associated function of the complement system and genetic susceptibility for infections.​​​
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Fadi Fakhouri
Professor of Nephrology and leading the Nephrology and Hypertension unit at the University Hospital in Lausanne, Switzerland. Has made significant scientific contributions to research with focus on complement-mediated kidney diseases.
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Søren Rittig
Professor of Nephrology and leading the Nephrology and Hypertension unit at the University Hospital in Lausanne, Switzerland. Has made significant scientific contributions to research with focus on complement-mediated kidney diseases.
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Marina Noris
Professor in Nephrology, Director of the Mario Head of the Laboratory of Immunology and Genetics of Transplantation and Rare Diseases at the Clinical Research Center for Rare Diseases, and the Head of the Center of Human Genetics at the Mario Negri Institute in Bergamo, Italy. Has in-depth expertise in rare genetic kidney diseases, particularly in rare complement-related kidney diseases.
She has leaded a number of research projects that allowed identifying new genetic causes of C3G/IC-MPGN, characterizing the functional consequences, in vitro and in vivo, of the new genetic anomalies, identified stratifying patients with C3G or IC-MPGN into homogeneous groups by pathogenesis, using genetic, biochemical, clinical, histological data and new biomarkers (identified with proteomics and metabolomics), in order to personalize therapies and optimize recruitment in clinical trials.
Nicole van de Kar
Pediatric Nephrologist at the Department of Pediatric Nephrology, Amalia Children’s Hospital, Radboud University Medical Center Nijmegen, Netherlands and Radboudumc Expertise Center for Complement mediated kidney diseases. Main clinical and research objectives are C3 Glomerulopathy, thrombotic microangiopathies/hemolytic uremic syndromes. Advisory member of the aHUS/C3G - Dutch Nephrology Patient Organization. Principal Investigator in ongoing multinational trials in C3G. Member of the National Laboratory Complement diagnostics and genetics, Radboudumc.​​​​
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Jan Ulrich Becker
Nephropathologist at the University Hospital of Cologne, Germany. Chair of the Nephropathology Task Force of the European Rare Kidney Disease Network (ERKNet). Past Chair of several Working Groups of the Renal Pathology Society (RPS). Author on several reviews and research manuscripts on complement-mediated renal diseases.
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Christoph Licht
Pediatric Nephrologist and Head of the Division of Nephrology at The Hospital for Sick Children in Toronto, ON, Canada. His research is translational in nature and focusing on unraveling the pathogenesis and treatment of complement-mediated diseases, in particular aHUS and PSGN / IC-MPGN / C3G. While participating in the establishing of C3 / C3 convertase inhibitors for the clinical use in treating patients with IC-MGN / C3G, his lab recently generated data in support of a key role of neutrophils and NETs in tC3G pathogenesis – insights pointing significantly expanding our current knowledge of disease pathogenesis and treatment strategies.​​​
Edwin Wong
Consultant Nephrologist at Newcastle upon Tyne Hospitals NHS Foundation Trust in UK and Associate Clinical Lecturer at the Institute of Cellular Medicine. Main clinical role is providing expert advice for the diagnosis and management of aHUS and C3G nationally. This includes implementing the NHS England Highly Specialized Services policies on the use of eculizumab in the treatment of these conditions. Holds leadership roles as clinical lead for C3G within the National Renal Complement Therapeutic Centre / Member of the MPGN/C3G Rare Disease Group.​​​
Antonia King
Patient and Family Community Lead at CompCure. Has experience as patient representative where she has worked as a consultant for various pharmaceutical companies. Furthermore Antonia has given inputs for publications about rare glomerular diseases and held lectures at congresses.
She holds a masters degree in “Psychosocial Counseling and Therapy in Social Work”.
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Jutta Schröder-Braunstein
Head of the Laboratory of Complement Diagnostics at the Institute of Immunology, University Hospital Heidelberg, Germany. The lab provides centralized complement diagnostic services for Germany with a focus on complement-mediated kidney diseases. It also participates in clinical studies addressing the pathophysiology, diagnosis and therapy of complement-related diseases. ​​​
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The CompCure Team
Giulia Bassanese
Coordinating Manager at CompCure and ERKReg Registry Expert.
Pediatrician at the Nephrology Department of the University Hospital at Heidelberg. Has worked in pediatric hospitals in Italy, UK and Switzerland. Is responsible for the esCapeKD project which collects clinical data and biomaterials from children with CKD.​
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Laura Siebert
CompCure project assistance. Student at Heidelberg University, majoring in European Art History and German Language and Literature.
Supports the CompCure and esCapeKD projects since January 2024.
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Jonas Hofstetter
Biostatistician assisting in the maintenance and statistical analysis of CompCure’s registry. Serves as a clinical research coordinator at the central office of the European Rare Kidney Disease Reference Network (ERKNet). Contributes to academic and commercial research projects using data from four different prospective registries and cohort studies: The European Rare Kidney Disease Registry (ERKReg); IPDN: The International Pediatric Dialysis Network’s registry for children on chronic dialysis; PodoNet: an international registry of patients with congenital and steroid resistant nephrotic syndrome; 4C study: The Cardiovascular Comorbidity in Children with Chronic kidney disease study.
Sebastian Myrup Hansen
Communications Officer at CompCure.
Transitioned into a communication consultancy role from a successful career as a journalist. Has produced several videos and written articles about rare kidney diseases, including C3G and IC-MPGN, which has supported the awareness and understanding of the unmet needs experienced by many patients and caregivers.​​​​​​​​
Patient Advocacy Board
Gulin Kayserili (Turkey)
Gulin is Vice President of the Turkish Association for the Fight Against PNH and aHUS, and a founding member of the aHUS CAB. She is also a caregiver to her husband, who has been diagnosed with PNH. Gulin supports CompCure in the search for patients and families living with C3G and IC-MPGN in Turkey. She also represents the voices of patients with C3G or IC-MPGN in the aHUS CAB and beyond.
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Adrian Ley (Austria)
As someone diagnosed with IC-MPGN, Adrian knows how challenging it can be to receive a clear diagnosis and the right treatment. He believes that much still needs to change — and that CompCure can play a significant role in driving that transformation. Drawing from his own experience, he hopes to help create better opportunities for others — and for himself.​
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Hyo Jin Heinz (Germany)
Hyo Jin is diagnosed with C3G. She is a HR professional currently working in Benefits Consulting. She has participated in multiple international patient/family advocacy groups to provide the patient perspective. Works with various pharmaceutical companies to provide feedback on informational materials. Spoken at various leadership meetings to represent the patient/family perspective. Passionate about giving hope to patients and families that 'normalcy' can be achieved through early diagnosis and clinical trials as an avenue of therapy.​
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Enrique Gordillo (Colombia)
Enrique is the father of a 10-year-old boy with C3G. He is a chemical engineer with 25 years of experience in the ceramic sector, nowadays in a regional position in Latin America. He has joined the patient advocacy team to collaborate on building a strong patient community, share the lessons learned from his family journey with those affected by rare kidney diseases, and stay connected with a network of patients, experts, and institutions. He and his wife share the vision of a near future where patients with complement-mediated kidney diseases can live normal and healthy lives.​​​​​​
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Sophia Glaser (Germany)
Sophia is diagnosed with C3G. She is a social scientist with a Master's degree in Intercultural Communication and Education. She is engaged in intersectional queer feminism and advocates for people with rare kidney diseases. With her expertise, she advises pharmaceutical companies on patient-centered research and communication. Within the Patient Advocacy Board, her key focus is to connect social and health policy perspectives, challenge structural discrimination such as ableism, and promote a discrimination-sensitive approach within the healthcare system. She is also active in queer political work. ​​​​​
Fabrizio Spoleti (Italy)
Fabrizio is a patient advocate who founded Progetto DDD ETS in 2010, a non-for-profit organization based in Milan, Italy. The mission is to finance scientific, clinical and experimental research projects on C3G from public and private non-profit institutions. Progetto DDD ETS also wants to be a reference point to support patients and their families and for the dissemination of knowledge about this rare disease. He is a father of a son affected by Dense Deposit Disease (DDD). He joined CompCure’s Patient Advocacy Board to facilitate and strengthen the collaboration between Italy and the international network on C3G, believing that global collaboration is fundamental.
C3G/IC-MPGN
The infrastructure connects critical stakeholders with the aim of achieving greater results together through strengthened collaboration
