Table 5.

X-Linked Hypophosphatemia (XLH) Resources for Patients and Providers

Patient advocacy and information	XLH Network – https://www.xlhnetwork.org/ Association for Individuals With Vitamin D-Resistant Hypophosphatemic Rickets (RVRH-XLH Europe) – http://www.rvrh.fr National Organization for Rare Disorders – https://rarediseases.org/ Global Genes – https://globalgenes.org/
XLH treatment information	A clinician's guide to X-linked hypophosphatemia (Carpenter et al)6 Clinical practice recommendations for the diagnosis and management of X-linked hypophosphatemia (Haffner et al)45 Therapeutic management of hypophosphatemic rickets from infancy to adulthood (Linglart et al)47 Patient resource on Crysvita® (Ultragenyx Pharmaceutical Inc., Novato, CA) – https://www.crysvita.com/
Additional resources	Little People of America’s suggestions for adaptive equipment and automotive accessibility – https://www.lpaonline.org/index.php?option=com_content&view=article&id=24 AbleData database – https://abledata.acl.gov/ Association for Driver Rehabilitation Specialists’ certified driving rehab specialist (CDRS®) certification https://www.aded.net/ International Pain Foundation’s pain management resource – https://internationalpain.org/x-linked-hypophosphatemia-xlh/ Rare disease peer support – https://themighty.com/topic/rare-disease/