Other international registries in this field are listed below;

• Eurordis Rare Diseases Europe
  • (http://www.eurordis.org/).
• National Organisation for Rare Disorders (NORD)
  • (https://rarediseases.org/for-patient-organizations/ways-partner/patient-registries/).
• Orphanet
  • (http://www.orpha.net/consor/cgi-bin/index.php).
• The National Registry of Rare Kidney Disease (RADAR – Rare Renal)
  • (http://rarerenal.org/).

This page was last updated on 4th Sept, 2018.