X-linked Hypophosphatemia Resources | XLH Community

Coming Soon!

A new XLH digital
resource is in development.

Kyowa Kirin is proud to support patients and families living with XLH. We are committed to bringing Canadians information on this rare disease.
Kyowa Kirin is excited to announce the arrival of a new digital XLH resource.

Stay tuned for news and updates!

XLH Resources

Find Your XLH Community and Online Resources

Although XLH is a rare disease, there are a number of communities that are available to you. These are communities of people, including families and medical professionals, that are helping people with this condition. You can also access patient support and advocacy organizations that provide useful information and resources to the XLH community. Find some of these communities and resources below.

The Canadian XLH Network

The Canadian XLH Network is a non-profit organization that aims to connect Canadians with XLH and promote XLH awareness in Canada.

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The XLH Network

The XLH Network, a 501(c)(3) non-profit 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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Canadian Organization for Rare Disorders (CORD)

CORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. The site also includes guidance about building an advocacy group or becoming a rare disease advocate.

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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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Le Regroupement québécois des maladies orphelines (RQMO)

RQMO is a group of associations dedicated to rare diseases and individuals affected by them (this site is in French).

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RareConnect.org is a safe, easy-to-use platform where rare disease patients, families, and patient organizations can develop online communities and conversations across continents and languages.

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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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Genetic and Rare Diseases (GARD) Information Center

GARD maintains a list of rare diseases and related terms to help people find reliable information.

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