The XLH Community

Becky, living with XLH

You may have a rare condition but you are not alone. There are communities of people, including families and medical professionals, all helping those with XLH. You can learn more about these communities below.

—Gini, adult with XLH

The XLH Network

The XLH Network is a 501(c)(3) non-profit organization. The XLH Network seeks to connect people around the world who are affected by or are interested in learning more about XLH. The XLH Network connects affected families, individuals, and medical professionals.

Connect with The XLH Network

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

National Organization for Rare Disorders, NORD, is an organization dedicated to providing resources about rare diseases.

Global Genes

Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connection and resources.