Patient support/advocacy groups dedicated to XLH:
- The XLH Network, Inc. (primarily the United States)
- Canadian XLH Network (primarily Canada)
- XLH-UK (primarily UK)
- The XLH Alliance (international, primarily Europe)
Umbrella organizations for rare disorders:
- National Organization for Rare Disorders (NORD, primarily United States)
- European Organization for Rare Disorders (EURORDIS, primarily Europe)
Other organizations:
- Global Genes (primarily United States, for genetic disorders, rare or otherwise)