1. For Patients and Families
- Vzácná onemocnění – General information portal on rare diseases in the Czech Republic.
- Vzácní.cz – Patient stories.
- Ledvinka – An information portal dedicated to nephrology patients.
- Síla pacientů – Supporting of patients within the healthcare system.
- RareConnect – An international platform connecting patients with the same diagnosis and sharing information.
- DiseaseMaps – A global patient map that helps locate individuals with the same condition worldwide (applicable only to those who choose to input their data into the map).
- Rare Disease Day – The official website of Rare Disease Day.
2. Professional Information and Registries
- Orphanet – European portal and encyclopedia of rare diseases and orphan drugs.
- ERKNet – European Reference Network for Rare Kidney Diseases.
3. Support Organizations
- Pacientský hub – A project by the Ministry of Health of the Czech Republic; a space for development, education, and collaboration among patient organizations.
- Pacientská akademie – Educational programs.
- EURORDIS – an alliance of patient organizations across Europe.
- AIFP
- AIPP
- Nadace Abakus – Fund supporting projects for families living with rare diseases.
4. Ministry of Health of the Czech Republic
- Pacientské organizace MZ ČR – Official registry and overview of patient organizations under the Ministry of Health.
- Department of Patient Support and Patient Rights of the MoH CR: propacienty@mzcr.cz
- NKCVO – National Coordination Center for Rare Diseases (Motol University Hospital).
5. Institutions
- Department of Nephrology
- Semmelweis university
- University of Alberta
- FN Motol a Homolka (Motol University Hospital and Na Homolce Hospital)