This website and the IgAN Friends community is brought to you by EKPF and ERKNet. These organisations are passionate about the wellbeing of people with chronic kidney diseases.
EKPF
The European Kidney Patients’ Federation (EKPF) is a non-profit organisation dedicated to representing over 75 million individuals with kidney health issues across Europe. As an umbrella federation, EKPF unites 27 national kidney patient federations from 26 different countries. We address all types of kidney diseases, including rare kidney conditions. Our mission is to raise awareness of kidney disease, elevate it on the European public health agenda, and promote prevention and early detection. We aim to empower individuals and healthcare providers with the knowledge needed to navigate and manage kidney health.
EKPF is committed to providing comprehensive information on all possible kidney replacement therapies, thus enhancing the quality of life for patients. We strive to increase awareness of rare kidney diseases to improve clinical research, diagnosis, prevention, and treatment. By fostering greater cooperation and information exchange with organisations and institutions involved in kidney diseases, EKPF enhances support and advocacy for patients.
In addition, EKPF focuses on increasing organ donation and transplantation rates. We provide educational materials and resources to ensure that patients and healthcare providers are well-informed and prepared to manage kidney health effectively. Our ultimate goal is to improve the well-being, treatment, social security, and living conditions of all patients and their families across Europe.
For more information, visit the official website: www.ekpf.eu.
ERKNet
ERKNet, the European Reference Network for Rare Kidney Diseases, is a consortium of 72 expert paediatric and adult nephrology centers across 24 European countries, providing care to over 70,000 patients with rare kidney disorders. The Network aims to improve the care of patients with rare kidney conditions.
It is also dedicated to improving knowledge about rare kidney diseases among patients and healthcare professionals. Through its website and various educational and training activities, ERKNet provides vital information and connects experts with patients. Additionally, ERKNet operates a worldwide patient registry for rare kidney diseases to support research and treatment efforts.
ERKNet works in close collaboration with European patient advocates (ePAGs) and various renal patient communities and organisations, ensuring that patient voices are integral to their initiatives. Actively supporting clinical research, ERKNet aims to enhance diagnosis, improve risk prediction, and advance the development of new therapies for rare kidney disorders.
For more information, visit the official website: www.erknet.org.
