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Helpful websites to assist your patients with their XLH journey

CANADIAN XLH NETWORK

The XLH network is a worldwide community of patients, caregivers, and healthcare professionals.

KIDSBONESCANADA

Educational events in support of childhood-onset bone disorders in Canada for clinicians, patients, and families.

CANADIAN ORGANIZATION FOR RARE DISORDERS

Rare disease public policy advocacy, education and research.

REGROUPEMENT QUÉBÉCOIS DES MALADIES ORPHELINES (RQMO)

Rare disease information for people living in Quebec.

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.

GARD

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

Connect the symptoms

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Suspect XLH?

Connect their symptoms and diagnose with the applicable tests.

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Patient case studies of XLH

See sample case studies of adults and children.

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Diagnosing XLH

Learn more about how to diagnose XLH through testing.