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Community and online resources

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XLH resources and advocacy groups

Although XLH is a rare disease, you are not alone. There are patient support and advocacy organizations that provide useful information and resources to the XLH community. You can learn about them at the links below.

Kyowa Kirin is a proud sponsor of The XLH Network, NORD, and their goals.

XLH Network logo

The XLH Network

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

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National Organization for Rare Disorders (NORD) logo

National Organization for Rare Disorders (NORD)

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

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Global Genes logo
Global Genes

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

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Get involved!

Another great way to get involved with the XLH community is to attend educational events, where you can learn more about the disease with a community of your peers.

Find events
Join the community

Sign up to receive helpful resources, get important event invites, and hear real patient stories that will support you on your journey.

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