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Patient child holding hand

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.

 

The CompCure Association pursues four main Objectives

  1. Strengthen the understanding of complement driven kidney diseases, including the pathophysiology, natural history, and overall burden of disease to patients, caregivers, and society.
     

  2. Improve the long-term outcome for patients through early diagnoses, improved treatment guidelines, development and access to disease modifying medicine and ultimately curative therapies.
     

  3. Increase the awareness of complement driven kidney diseases broadly across healthcare institutions, health care authorities, regulators, and other relevant stakeholders.
     

  4. 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

  1. 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.
     

  2. 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.
     

  3. 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.
     

  4. 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.

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.

The Board

C3G/IC-MPGN

The infrastructure connects critical stakeholders with the aim of achieving greater results together through strengthened collaboration

C3G/IC-MPGN Infrastructure model
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